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» LymeNet Flash » Questions and Discussion » Medical Questions » Interstitial Cystitis

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Author Topic: Interstitial Cystitis
Rumigirl
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Hello All, and especially Lymetoo and Bartender Bonnie,

I believe that I've had Interstital Cystitis for about 2 1/2 years, and maybe a lot longer---along with Vulvodynia.

The only doctor I've seen for this was my then gyn in 2018; she's since retired. She didn't think that I had either one, but it was clear that she didn't really understand them.

When it came on really strongly in May or June 2018, it felt like a spread of the Complex Regional Pain Syndrome that I developed in 2014 after a horrible fall, injuries, and intense surgery with much delayed diagnosis and surgery. CRPS used to be called RSD, Reflex Sympathetic Dystrophy.

This last few days I had a severe flare up of it. It felt like I was peeing broken glass or knives, and the pain and pressure in my bladder was awful. Plus, peeing constantly. It felt like my insides were falling out! (What??).

I again read all the info on Lymenet about, which is a lot. Thank you, Lymetoo, you've written a lot of great info on this awful condition.

I have a few questions for you, Lymetoo, or anyone else with experience with this. Is cofee definitely high in oxalates, or otherwise a no, no?. I presume so, but Sally Norton, and some others say that it is not high in oxalates.

Did doctors provide much useful help in the long run?

I ask, because I assume that dealing with Lyme and company is one of the most important things in dealing with it. I hate to run to doctors and tests when dealing with this and the below issues may be the best help.

I right away took out my D-Mannose and started taking that, which helped tremendously. That's a wonderful too.

I'm a little overwhelmed at dealing with the oxalate issue, as I have been drinking both coffee and tea daily, taking about 3,000 mg of vitamin C a day (1,000 mg at a time), regularly eat potatoes (I'm an Irish lass!), sometimes spinach, and was eating cashew butter daily!!! Yikes, they're all really high in oxalates!!

Another non-oxalate contribution, I think: I've been ramping up on exercise, after way too long without. I've done a lot of exercises that include Kegel's, which may be too much at once.

Thank you for any feedback anyone can give.

[ 01-11-2021, 01:16 AM: Message edited by: Rumigirl ]

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Lymetoo
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Oh OUCH!! I refuse to ever touch spinach again and vitamin C has been on my NO list for more than 30 years. Stay away from it!

I take D-Mannose twice a day.. without fail.

I can ask about coffee. I know I can't do coffee or tea. I used to be able to drink tea, but now I'm sensitive to salicylates.

I have forgotten .. Do you also have MCAS? It is HIGHLY associated with IC.

So .. MCAS meds may help. I take pepcid and zyrtec and have found that cromolyn sodium really helps.

Cashew butter is not a good idea either. I guess you will starve like me. I have gained weight, not lost .. but only because I get so hungry that I eat things I shouldn't!!

btw, Spinach is over 400 mg of oxalates, while potatoes would be more like 100. Spinach is just not worth it.

I have had many procedures by my former urologist, but I manage my IC by doing the things I just mentioned.

I hope you can get it under control. Maybe a low oxalate diet would also help the CRPS?

PS... Do NOT lower the oxalates too quickly or you will really pay for it.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Rumigirl
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Thank you, Lymetoo!! MCAS, I don't know if I have it or not. I've been so overwhelmed with the various conditions that I have that I haven't looked into it that much---arghh! I may well have it though.

Does taking a buffered form of vitamin C, like sodium or calcium ascorbate help? I hear you, you just don't take it. I always seemed to need a fair amount of it.

Some hours after I started taking the D-Mannose (and an Aleve for acute pain), it started to improve. That stuff is magic!

Yes, I was wondering if the low oxalate diet will help the CRPS. I have really horrific neuropathy that is fast increasing, which is a large part of the CRPS.

I am about to see a new LL neurologist for help with it all, as my previous one stopped responding to emails, letters, etc. I can't even get my records from him after nearly a year of trying. I don't know if it's his health issues or what.

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lisaloo
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I can drink several brands of low acid or cold brew, as long as I don't overdo. But I couldn't until IC was 99% under control.

I can't do any types of Vitamin C.

--------------------
Lisa Theobald

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lymenotlite
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An interesting article on IC:

https://www.bustle.com/p/what-causes-interstitial-cystitis-how-10-women-got-to-the-root-of-their-bladder-pain-15913236

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Lymetoo
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Buffered C never was a "go" for me. I tried tons of brands and formulas.

PS .. High doses of C also contribute to the oxalate issue. The TLO site recommends keeping it under 500 mg per day. That is NOT taking into account your IC.

If you begin lowering your oxalates, do it only 10% each day.

As for MCAS, it is my biggest issue. Once I found treatment for it, things are much better. Do not ignore the possibility. It might be your turning point!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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Great article, Lymenotlite.... I have most of the ones on that list.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Rumigirl
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quote:
Originally posted by lymenotlite:
An interesting article on IC:

https://www.bustle.com/p/what-causes-interstitial-cystitis-how-10-women-got-to-the-root-of-their-bladder-pain-15913236

Wow, thank you!! I have to read this; it seems to cover everything.

If you don't mind my asking, did you have to deal with this? And if so, how did you get over it? Thank you.

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Rumigirl
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quote:
Originally posted by lisaloo:
I can drink several brands of low acid or cold brew, as long as I don't overdo. But I couldn't until IC was 99% under control.

I can't do any types of Vitamin C.

How did you get over it? Reducing oxalates? Treating the Lyme?
Thank you.

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Rumigirl
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quote:
Originally posted by Lymetoo:
Buffered C never was a "go" for me. I tried tons of brands and formulas.

PS .. High doses of C also contribute to the oxalate issue. The TLO site recommends keeping it under 500 mg per day. That is NOT taking into account your IC.

If you begin lowering your oxalates, do it only 10% each day.

As for MCAS, it is my biggest issue. Once I found treatment for it, things are much better. Do not ignore the possibility. It might be your turning point!

That answers one of my questions---about going cold-turkey on coffee, etc., things that are high in oxalates. So far I am reducing them.
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Rumigirl
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One other question for people, knowing these things to address, would you recommend seeing a urologist or urogynocologist? Or just to address these factors? I have so much doctoring and dentisting to do, I hate to go to yet another doctor. But maybe I should.
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Bartenderbonnie
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Hi Rumigirl

I would see a urologist.
My urologist is an oncology urologist. It took him almost 1 year to get me well. Appointments every week, then every 2 weeks, and then 1 time per month.

As for coffee, I live on coffee.
I know it’s not good for me but it gets me out of bed. When I have an IC flair, I stay away from it and drink green tea.

For pain I use a lidocaine patch on the left side of my bladder and another patch on my lower back. And I’ll take a gabapentin at night. If my flair gets out of hand, back to the urologist for a tune up.

lymenotlite
Thanks for posting your great article. Really enjoyed it.
Of coarse I had to read the next 2 articles about hangovers.

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Rumigirl
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Bartender Bonnie,

In order for your urologist to get you well, did you do instillations and other treatments? I'm a little afraid of such things exacerbating the severe pain that I have in the whole area, with sitting or any contact with the whole vaginal, urethral, bladder area inflaming the pain further.

I also was hoping that eventually going back on treatment for Lyme and confections would help to get over it all.

But it's also a part of the horrific neuropathy that I have that is escalating really fast---again, largely due to Lyme & co, I think.

I just had a severe blow today: the LL neurologist that I have been preparing to see for months (long story), today on the phone refused to work with me, because I said that I have Lyme and would go back to treating it. This is a guy who has diagnosed people with Lyme and treated them and bragged about doing so, when other doctors didn't have a clue. Whaaat???

Now I have no LL neurologist to see. He would not back down from his position. I'm stunned and left hanging again. This after my long-time LL neurologist stopped making or keeping appointments, and wouldn't even respond to requests for my records for nearly a year. (I know he had medical issues, but . . . ).

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lymenotlite
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From an Amazon book review:

"This isn't the first book to go over this stuff. And yet it doesn't mention ozone instillations. As a urologist, you have the power to bring new treatments to new patients. I highly recommend you look into this. I have been 100% IC free (no flares EVER no matter what) for 3+ years, and I credit ozone instillations I had at Choices in Health in Boulder in 2013. Please stop offering the same useless stuff to patients and telling them their best hope is "managing" their IC. That is NOT success. Recovery is.”

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lymenotlite
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I put the above on the hyperbaric thread and Digby provided some info:

"Ozone therapy for IC works directly on the inner membrane of the bladder and can sometimes result in improvement or cure after only one treatment. A urinary catheter is inserted into the bladder and ozone gas from a medical ozone generator is slowly introduced. At the right dose and concentration the ozone will kill infections and reduce inflammation on contact."

I'm in the early stages of looking into which way to go. I'll be checking for practitioners in my area that do this type of ozone therapy, if any. I may not need this.

[ 01-17-2021, 06:39 PM: Message edited by: lymenotlite ]

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lymenotlite
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It's very important to be able to find useful health information online. In that regard, I've been finding that Firefox search results have become increasingly like commercial listings.

I have a friend that uses Brave browser so yesterday I tried it and the bustle.con article quickly came up. I can't remember the exact search terms but they were very similar to or exactly the same as the FF ones. I was surprised. I think the info on this article is going to be very helpful.

I'll be trying out different browsers.

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Bartenderbonnie
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Yes, I did bladder instilliations with DMSO / RIMSO - 50.
It's a slow process but it worked for me.

I also had a cystoscope with hydrodistention.
This is an out-patient procedure under general anesthesia. Urologist basically blows up your bladder with fluid to get a better look. I also had a biopsy taken at the same time, non-cancerous.

https://www.ichelp.org/diagnosis-treatment/diagnosis-of-ic/cystoscopy-with-hydrodistention/

As for Neuro's, I've gone through at least 5 or 6. They stand firm on IDSA guidelines. No chronic Lyme. Refuse to even address the notion while you're dying in front of them! I know of no other disease that causes such a wide range of neuro symptoms other than Lyme disease.

And there's an organization that advertises they will send you referrals to LL Neuro's but they are not ILADS trained. You really have to research LLMD's. Here's a reputable referral organization to connect you to LLMD's;

https://www.ilads.org/patient-care/provider-search/

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Lymetoo
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Rumi .. I have had two cystoscopes with hydrodistension back in the 90's. The second one made me worse and I had to quit teaching at that point.

I also had DMSO instillations, heparin instillations and other things I don't even remember now.

The DMSO was really painful .. I would not suggest it for you. Had I known back then about MCAS, I could have had treatment for it and perhaps have gone back to teaching.

But .. MCAS was only identified about 12 years ago.

I pray you will be able to find another LL neurologist.

As per the urologist .. that's how I would go. They should know way more than the urogynocologists about the bladder, but it's also very individual.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Rumigirl
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quote:
Originally posted by lymenotlite:
From an Amazon book review:

"This isn't the first book to go over this stuff. And yet it doesn't mention ozone instillations. As a urologist, you have the power to bring new treatments to new patients. I highly recommend you look into this. I have been 100% IC free (no flares EVER no matter what) for 3+ years, and I credit ozone instillations I had at Choices in Health in Boulder in 2013. Please stop offering the same useless stuff to patients and telling them their best hope is "managing" their IC. That is NOT success. Recovery is.”

Wow, that looks really promising! I have an ozone generator and catheters, but, frankly, would want a doctor's office to do this. I don't want to be free-lancing on this one.

Thank you, lymenotlite, for this and the following post with the links! The IC Association is a great resource.

[ 01-12-2021, 11:33 PM: Message edited by: Rumigirl ]

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lymenotlite
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https://www.ichelp.org/

https://www.ichelp.org/diagnosis-treatment/treatments/bladder-instillations/

https://www.inspire.com/groups/interstitial-cystitis-association/discussion/bladder-instillations-helpful-or-hurtful/

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Rumigirl
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Thank you, BB.

quote:
Originally posted by Bartenderbonnie:
Yes, I did bladder instilliations with DMSO / RIMSO - 50.
It's a slow process but it worked for me.

I also had a cystoscope with hydrodistention.
This is an out-patient procedure under general anesthesia. Urologist basically blows up your bladder with fluid to get a better look. I also had a biopsy taken at the same time, non-cancerous.

https://www.ichelp.org/diagnosis-treatment/diagnosis-of-ic/cystoscopy-with-hydrodistention/


As for Neuro's, I've gone through at least 5 or 6. They stand firm on IDSA guidelines. No chronic Lyme. Refuse to even address the notion while you're dying in front of them! I know of no other disease that causes such a wide range of neuro symptoms other than Lyme disease.]

I did see a new neurologist in March, who was extraordinarily thorough. But he had no knowledge about Lyme causing all of this. He also was quite dismissive about my balance and perception issues, saying, "Well, you're a __-year-old woman! As if that was the cause of my neuro symptoms and that they were normal for my age!

And there's an organization that advertises they will send you referrals to LL Neuro's but they are not ILADS trained. You really have to research LLMD's. Here's a reputable referral organization to connect you to LLMD's;

https://www.ilads.org/patient-care/provider-search/

l looked there for any other LL neurologists, but didn't see anyone else.

The thing that is flummoxing for me is that, I don't just have IC, along with Lyme & co.

I have severe, progressive neuropathy and unbearable neuropathic pain over the whole lower half of my body, including urethra, vulva, and bladder, my hands, my lips and inside my mouth. So, it's such a complicated picture. The neuropathy includes severe numbness, tingling, and stabbing pains in my feet, legs, nether region, hands, and lips. That's why I thought urogynecologist, as I have vulvodynia.

But I first need a LL neurologist!! The extent and progression of the neuropathy is so bad. Yes, I've been through a number of neurologists, too. Yes, infuriating, isn't it?!

The one that just refused to work with me on the phone yesterday, did so after deliberately branding himself over 14 years as working with Lyme patients, in groups, public speaking, a recent book, etc.!!!

I had resisted going to him inwardly, because he is abrasive and money-hungry, and charges a fortune for testing, which he wants to do all himself. But I had not other real choice.

I may email him back, to try again, because he was saying things that just aren't so about how I, or my LL doctor, would treat Lyme, etc.

I've talked with him on the phone twice now, and he just doesn't listen to what I'm saying and keeps repeating his points, which don't make much sense. Great, right? Not!

There's also a woman, who is well-known, including on LN, but she is far worse in terms of charging a fortune, having unworkable policies, and seeming to only care about money now. Sadly, she started out great, I hear, and she knows a lot.

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Rumigirl
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quote:
Originally posted by Lymetoo:
Rumi .. I have had two cystoscopes with hydrodistension back in the 90's. The second one made me worse and I had to quit teaching at that point.

I also had DMSO instillations, heparin instillations and other things I don't even remember now.

The DMSO was really painful .. I would not suggest it for you. Had I known back then about MCAS, I could have had treatment for it and perhaps have gone back to teaching.

But .. MCAS was only identified about 12 years ago.

I pray you will be able to find another LL neurologist.

As per the urologist .. that's how I would go. They should know way more than the urogynocologists about the bladder, but it's also very individual.

The thing that scares me about distillations, cystoscopes, etc. is that with the Complex Regional Pain Syndrome that I've had since 2014, is that any touch, manipulation, injection, etc., even very light touch exacerbates the pain tremendously. Surgery and injections are very high risk, especially in the areas that are affected. Arghh!

Also, the bladder is not my worst area, except when I'm having a flare there. But the urethra and vagina, and going up inside is bad most of the time. Nighttime is the worst.

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Lymetoo
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Rumi .. In your case, I would avoid all of that.

Just keep reducing your oxalates.

Are you taking cromolyn sodium? I can't remember. It may help you a lot.

Best wishes and love to you!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Rumigirl
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Thank you, Lymetoo. Yes, I agree. I may or may not go to a urologist, but maybe for any rx's that would help.

Is cromolyn sodium OTC? I know it is used for MCAS, which I haven't been evaluated for. I have so many other urgent medical and dental issues to address! That's why I haven't addressed that yet.

After an improvement in symptoms from using D-Mannose and reducing oxalates (which will be on-going), today I am having a worsening of symptoms again. Probably because I only took D-Mannose once yesterday (a mistake!), and because I had a little bit of cranberry sauce my husband made last night. It had cranberries and orange. Arghhh, I can't get away with either of those, clearly.

I am reducing coffee, which is tough. Not because I love it, but as BB said, it's hard to function without the caffeine. Is caffeine inherently bad in terms of IC besides oxalates? I assume because of the acids, too, even though I use cold-brew, which is much lower acid

Oh, and I've still taken small amounts of sodium ascorbate (buffered vitamin C). I suffer without taking enough C. Don't know what to do about that. Today I'm taking none. Sigh.

PS Some of the things that are listed as bad for IC are not at all high in oxalates, like cranberries (acids?) and yogurt. But they say kefir is ok. Hmmm. I guess a lot of it is individual and trial and error.

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Rumigirl
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Whoops, well today the bladder/urinary pain, pressure, and urgency were severe again, it seems that it is a bladder infection. I didn't eat or drink anything that could make it worse yesterday except a little coffee (I am am weaning down).

I tried calling the office of a urologist I saw a few years ago, but they have nothing available. And that guy is out-of-network and massively expensive.

I tried to get in to see the gyn I saw recently (my previous one retired), but her office said to see my PCP. I told them my PCP is usually booked way in advance. No dice. Tried PCP, no urgent appts or call back. But I rarely see him, so I can't blame him.

I was about to go to Urgent Care just to get abx for it, but now am just doing frequent doses of D-Mannose. It is helping. It's been severe on and off for much of the week now though.

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Bartenderbonnie
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Poor Rumigirl, IC is just so painful.
This is your most urgent need that needs to be addressed first.
Is it possible to make an appointment with any urologist close by? You need to be seen by a medical professional.

As for your other mounting issues, it’s hard to not get bogged down with diagnosis’s that main-stream doctors offer but haven’t a clue as to what causes it, like fibromyalgia or chronic pain or early dementia. We as Lyme patients know our disease affects every inch of terrain in our bodies, eyes, brain, heart, thyroid, bladder, central nervous system, yada yada yada.

I believe a LLMD is the only way to go to get answers and treatments. You might not necessarily need a Neuro LLMD as most LLMD’s are quite familiar with the neuro aspects of Lyme disease.

I think you said you had a Nerve Conduction Velocity test and Electromyography test last year? If so, your script has probably expired for ivig. You need your medical records because I can’t imagine having to go through those tests again. I had to quit halfway through the NCV test, so barbaric volunteering to be electrocuted.

Also, most doctors are offering phone consults and tell-medicine due to COVID. This might help you get an appointment sooner. Of coarse, a LLMD will want to see you in person for initial appointment. We aren’t called warriors for nothing. We go through so much, stay in the battle.

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Rumigirl
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Thank you, Bartenderbonnie. I can't thank you and Lymetoo, and everyone else who has responded enough! I am so grateful for your support and experience. What would we do without LN??

Since last weekend when it started, a lot of the time my urine has been extremely cloudy, which means WBC in the urine fighting infection. So that points to actual infection.

I tried today to get an appt with some other urologists in the hospital system, but couldn't. If it's bad tomorrow, I'll try again that route and again with the PCP, but he is always booked way in advance.

Otherwise, I'll have to go to Urgent Care, which is always awful in my experience, and a gamble as to whether the practitioner you get is any good or not. Not to mention all the waiting with patients who may possibly have Covid.

The D-Mannose helps enormously, but the fact that it keeps coming back bad again makes me think I should see someone before the weekend. The odd thing is, if it's better from D-Mannose, the urine test may not show bacteria. But then it may come back again.

No, I haven't had any recent EMGs, due to the fact that it could exacerbate the CRPS. In spite of that, I'll probably get it done. I can't get my records from my previous LL neurologist. I've asked for them

since last February, over and over again via email, and sent 2 certified letter! No response. They said in June they would send them, but no response after that. I know, it's illegal.

I do have an LLMD, however, that I am way overdue to go back to. He can't authorize IVIG. But, of course, he understands Bb & co and all of it's effects.

I need to see a neurologist though about the fact that I have rapidly progressive severe numbness, tingling, and unbearable neurological pain over more than 1/2 of my body. It's torture. (This should be another thread, but I have two threads now as it is!).

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Rumigirl
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Last night is when I realized that this is a UTI, as opposed to IC, Although I felt better early today due to taking many doses of d-mannose yesterday, I wasn't confident that it wouldn't come back yet again this weekend.

My PCP's office called back today, and I had a virtual visit with him. He Rx'd Bactrim for me for 5 days. Usually, it would be 3 days, but since I've had this for 6+ days, he gave me a couple of more days worth. I also went to the office to give a urine sample, in case the Bactrim doesn't take care of it.

I probably do have IC as well, and now am on the path of addressing oxalates and other issues affecting that. That will be an on-going effort.

Thank you, everyone, for all of your information and support!! In retrospect, I should have seen a doctor sooner, but thought this was strictly IC, not necessarily an infection. I am way too used to "going it alone" and trying to figure it out myself. Not that I am alone on LN. [Smile]

Posts: 3668 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Rumigirl
Frequent Contributor (1K+ posts)
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Last night is when I realized that this is a UTI, as opposed to IC, Although I felt better early today due to taking many doses of d-mannose yesterday, I wasn't confident that it wouldn't come back yet again this weekend.

My PCP's office called back today, and I had a virtual visit with him. He Rx'd Bactrim for me for 5 days. Usually, it would be 3 days, but since I've had this for 6+ days, he gave me a couple of more days worth. I also went to the office to give a urine sample, in case the Bactrim doesn't take care of it.

I probably do have IC as well, and now am on the path of addressing oxalates and other issues affecting that. That will be an on-going effort.

Thank you, everyone, for all of your information and support!! In retrospect, I should have seen a doctor sooner, but thought this was strictly IC, not necessarily an infection. I am way too used to "going it alone" and trying to figure it out myself. Not that I am alone on LN. [Smile]

Posts: 3668 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
   

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