Abnormal thirst and chronic bladder issues

[bleusky]

Hi everyone,

I'm posting on behalf of a friend who was diagnosed with ME a few years ago. She recovered and went into remission for a period, back to life, work etc.
Unfortunately, a UTI infection (possibly) about a year ago set her back to a 24/7 bedbound state.
In addition to fatigue, her main symptoms are an abnormal thirst, lack of appetite, yellowish tongue, inflamed bladder, disturbed sleep due to frequent nocturnal urination.

I wondered whether anybody has had to deal with this kind of symptom picture.
In particular, an abnormal thirst and need to drink. Appetite is lacking and she can eat very little once a day, usually at night and only after drinking 6-7 pints of water which seems to stimulate a little appetite for food.
Diabetes, including diabetes insipidus have been ruled out by the doctors, so has any bladder infection that would explain discomfort in the pelvic area and frequent urination.

I would appreciate if anybody has had any experience with this sort of issues, any insights or suggestions on possible remedies as she doesn't know where to turn.
Many thanks.

 

[caledonia]

I assume she took antibiotics for the UTI. Did she take probiotics after that to rebuild the good gut bacteria? With the low appetite (low level nausea?), it seems like there is some sort of gut involvement. Maybe do a good gut test like Metametrix GI Effects.

I don't think diabetes insipidus is really ruled out.

http://www.cfs-healing.info/treatment-protocols.htm

It is important to drink sufficient water for proper hydration of the body and for proper operation of the bowels. Many PWCs have a higher than normal requirement for water, because they suffer from central diabetes insipidus (not the same as the more common diabetes mellitus). Central diabetes insipidus results from insufficient secretion of antidiuretic hormone by the hypothalamus and pituitary gland, and this causes the kidneys to pass too much water into the urine. The result is constant thirst and low blood plasma volume.

The latter exacerbates problems with orthostatic intolerance (inability to stand for a significant length of time because of poor blood supply to the brain). Several of the minerals found in natural waters are among those essential to the body, and many PWCs are deficient in some of them, particularly magnesium and calcium.

I do electrolyte water four times a day. I have my own made up version - salt, magnesium glycinate powder, vitamin C with ribose (Beyond C). Some people might need potassium. I don't know about the calcium suggested. Don't do salt if she has high blood pressure. Usually PWC's have blood pressure on the low side. This should provide some immediate help.

Read Rich Vank's paper on how Glutathione Depletion causes the symptoms of ME/CFS, if you're not familiar with it. http://phoenixrising.me/research-2/...ue-syndrome-by-richard-a-van-konynenbury-ph-d

The ultimate thing would be to do a methylation protocol to get the glutathione levels back up.

 

[bleusky]

Hi Caledonia,
thanks for your suggestions. Yes, she did try courses of antibiotics but with no apparent benefit. She has been seen by different doctors and all ruled out diabetes insipidus.
She's been taking probiotics but may be not enough as she also suffers from some digestive issues and in fact she's going to have a gut test shortly. The thirst seems quite weird, unusual and the trouble is that she doesn't tolerate electrolytes, magnesium etc.

The ribose seems a good idea, worth a try and may be also the vitamin C (the acidity may upset her bladder?)
The low appetite is not due to nausea but to an aversion to food which goes away only after drinking for a few hours.
I am familiar with RvK paper on methylation as I also have ME and I have been doing the protocol for some time with some results. My friend has not tried it so far but I agree that it's certainly a treatment to consider.

 

[taniaaust1]

She's probably developed POTS (postural orthostatic tachycardia syndrome). Its a common ME coexistor issue.. POTS patients need to drink a lot and hence pee a lot so hence looks like the person has diabetes but they dont. In POTS there is usually has low blood volume involved hence the persons thirst. . Severe POTS can also leave some bedridden. She probably needs to be on something like Florinef for it to boost her blood volume and help her body to hold onto its fluids (which seems to be the most common POTS treatment). Florinef needs to be taken with an increase in salt.


If her POTS is severe enough it may even show up just on laying to sitting testing, I know mine has at times (but i get an up to a 67 beats per minute increase rather then the just 30 beats increase needed for a diagnoses). (thou laying to sitting, isnt the proper way to test which is laying to standing..but if she's be bedbound she probably wouldnt do well with even the normal poor mans POTS test and getting tilt table tested would not be managable to her).

for info on POTS http://www.dinet.org/

 

[Ema]

Has she looked at her aldosterone production? If low, this can cause increased thirst and frequent nighttime urination.

Has she had electrolyte labs done recently?

Also, I would look into interstitial cystitis for the bladder symptoms. Forskolin is excellent for bladder pain as it can expose E. coli stuck beyond the reach of antibiotics in the umbrella cells. UT Synergy by Designs for Health is a great supp for bladder issues. It also contains d mannose which can be a real lifesaver for women with recurrent bladder pain.

ETA: I just discovered UT Synergy no longer has forskolin. It is still a good supp but this is a terrible decision in my opinion. I would definitely get the forskolin separately.

Ema

 

[beaker]

It is possible that there is more than one thing going on.
The bladder symptoms make me think of Interstitial Cystitis .
The other symptoms --- I would hope they have ruled out kidney disease, as well as any thyroid issues ?

I have high thirst level. Never feel quenched no matter how much I drink.
Part is from dry mouth ( meds plus sjogren's like thing --- my opthomologist says eye docs look at what is going on ( inflammation in the glands) and don't care about the immune markers to make a dx. rheumy says no markers, no dx. so they agree to disagree)
I think part as other mentioned from POTs.
and part is prob. just this mystery of ME/CFS.

 

[Hip]

The bladder symptoms make me think of Interstitial Cystitis

I agree, she could have interstitial cystitis, or a very similar condition called overactive bladder.

Both involve an excessive urgency, and increase frequency, to urinate. Bladder pain is involved in interstitial cystitis, but not usually overactive bladder.

Interstitial cystitis and overactive bladder are comorbid conditions in fibromyalgia.1 2 By comorbid, we mean they frequently found to appear in fibromyalgia patients, and so the possible implication is that these conditions might predispose to getting fibromyalgia, or make fibromyalgia worse. I have not seen any study that indicate they also make ME/CFS worse, but since fibromyalgia and ME/CFS are very similar, it's conceivable.

Research on cats with interstitial cystitis shows that they may have mild primary adrenal insufficiency.1


Overactive bladder can be caused by a UTI infection. If she thinks she caught a UTI, it is a good idea to get a urine test for bacteria, the urine sample is best taken when there is a flare-up of UTI symptoms (if any).

If the urine test for bacteria comes back negative, then there may still be a bacterial infection, but of the L-form bacteria variety. L-form bacteria are ones that have changed morphology in order to live within human cells. L-form bacteria are not detectable by normal tests, and they require different antibiotics. Tulane University is the only place in the world that has expertise on L-form bacteria UTIs.

 

[Sparrow]

I don't know about the bladder issues, but I am chronically thirsty. That part seems to be common with ME. I'm especially thirsty when I've overdoing it with activity.

 

[xks201]

The DI test doctors use, the water deprivation test, is pretty much useless. Take my word for it. She probably has partial DI.

 

[bleusky]

Many thanks everyone for their suggestions, they're most appreciated.
If I summarize from above posts the possible helping treatments:

- Simplified methylation protocol to help with any HPA or hormonal dysfunction (kidney disease and thyroid abnormalities have been ruled out)
- Florinef + salt for POTS
- Forskolin and D-Mannose for the bladder/IC. I had never heard of Forskolin before but sounds like an interesting one to try. Seems to help "Reduce urinary tract infections and enhance the ability of antibiotics to kill bacteria that normally survive"
- Dealing with L-form bacteria.

If the urine test for bacteria comes back negative, then there may still be a bacterial infection, but of the L-form bacteria variety. L-form bacteria are ones that have changed morphology in order to live within human cells. L-form bacteria are not detectable by normal tests, and they require different antibiotics. Tulane University is the only place in the world that has expertise on L-form bacteria UTIs.

Hip, do you know what kind of protocol they use at Tulane to treat L-form bacteria?

xks, I don't know what to say about DI or partial DI. It's possible but is there any other test that would be more reliable?

 

[Filippo]

I don't know about the bladder issues, but I am chronically thirsty. That part seems to be common with ME. I'm especially thirsty when I've overdoing it with activity.

Hello,
I am new to this forum and I greet averyone inside here
I have this unexplainable feeling of a dry mouth since 2008
I give details of what it is happening to me in regard to this; since early 2008 I noticed I had this feeling especially at nights. Those years I used to carry a liter water to my bedroom to spend the night, as I noticed that this dry mounth always showed up during nights. This was at the beginning. I noticed that this dry mouth did not ceased whatever was the amount of water I drank during my sleeps. That feeling used to go away only after breakfast, in which I ate some fruit.
Before 2008 I usually did not touch a single drop of water during nights, and used to have mostly uninterrupted sleeps.
After 2008 this dry mouth never went away, but with time going on it extended its presence during my days.
So all those years I always had it
Recently, I mean last 3+ years, I noticed that I am keeping this dry mouth round the clock, and I can say that the feeling is located both in the upper part ( i.e. the palate ) and the gums.
I also have noticed that it increases if I make physical efforts, if I have an emotional stressor coming on me, and even if I think.
Together with this long term feeling I noticed in the last year that even my eyes are drier than in my past, and I got a measure of this during an ophtalmology visit.
I am aware that the Sjogren Syndrome has those symptoms, but I do not know how to start with it
Besides, I have a so long symptoms story that I could fill this post alone with them, and despite all those symptoms I have no diagnosis at all ( the very first symptoms date 2007 )

As I am willing to address non-italian specialists ( I live in Europe ), 'cos I am sick of them, any hint would be much appreciated
Thanks alot

 

[fava]

I agree, she could have interstitial cystitis, or a very similar condition called overactive bladder.

Both involve an excessive urgency, and increase frequency, to urinate. Bladder pain is involved in interstitial cystitis, but not usually overactive bladder.

Interstitial cystitis and overactive bladder are comorbid conditions in fibromyalgia.1 2 By comorbid, we mean they frequently found to appear in fibromyalgia patients, and so the possible implication is that these conditions might predispose to getting fibromyalgia, or make fibromyalgia worse. I have not seen any study that indicate they also make ME/CFS worse, but since fibromyalgia and ME/CFS are very similar, it's conceivable.

Research on cats with interstitial cystitis shows that they may have mild primary adrenal insufficiency.1


Overactive bladder can be caused by a UTI infection. If she thinks she caught a UTI, it is a good idea to get a urine test for bacteria, the urine sample is best taken when there is a flare-up of UTI symptoms (if any)
If the urine test for bacteria comes back negative, then there may still be a bacterial infection, but of the L-form bacteria variety. L-form bacteria are ones that have changed morphology in order to live within human cells. L-form bacteria are not detectable by normal tests, and they require different antibiotics. Tulane University is the only place in the world that has expertise on L-form bacteria UTIs.

Hello,

if is possible, I ask for information about a few of very important issues,
please, from HIP:

Where did he read exactly about L-form bacteria, or who did talk to him about?
When HIP speaks of Tulane university and L-form bacteria, whom does he refer to in particular, which professor?
How can HIP be sure that the l-form causes Interstitial Cystitis, who told him that?

Please, from EMA :
Where did she read about Forskolin to kill Escherichi Coli?

With deepest gratitude in advance for your clear answers,

Fava

 

[Ema]

Here you go fava!

http://www.medpagetoday.com/InfectiousDisease/GeneralInfectiousDisease/5404

 

[fava]

Thank-you, Ema! Please keep in touch, if possible.

Bye from Italy,

Fava

 

[Hip]

Hello,

if is possible, I ask for information about a few of very important issues,
please, from HIP:

Where did he read exactly about L-form bacteria, or who did talk to him about?
When HIP speaks of Tulane university and L-form bacteria, whom does he refer to in particular, which professor?
How can HIP be sure that the l-form causes Interstitial Cystitis, who told him that?

Please, from EMA :
Where did she read about Forskolin to kill Escherichi Coli?

With deepest gratitude in advance for your clear answers,

Fava

HI Fava

I have known about L-form bacteria for a long time, from reading all about the Marshall Protocol, a chronic disease treatment protocol devised by Prof. Trevor Marshall. Marshall believes that L-form bacteria cause a number of diseases, including ME/CFS, but this is a very controversial idea, and there is no proof as yet.

Professor Gerald J. Domingue is the researcher at Tulane University who has been studying L-form bacteria for the last 30 years. The study of L-form bacteria and their link to disease is a scientifically controversial area. Prof Domingue's work has implicated L-form bacteria in several kidney-related diseases including pyelonephritis, glomerulonephritis, idiopathic hematuria, and interstitial cystitis.

There is no proof as yet that L-forms cause interstitial cystitis or these other diseases, since association does not imply causation. I did not say that L-forms cause interstitial cystitis. It is just a possibility that L-forms might be the cause interstitial cystitis.

Hip, do you know what kind of protocol they use at Tulane to treat L-form bacteria?

The antibiotic treatment of L-form bacteria UTIs recommended by Professor Domingue is as follows:

Source from page 138 of the book: Cell Wall Deficient Forms — Stealth Pathogens. Lida H. Mattman.

 

[fava]

Dear Hip,
thank-you for your answer.I know the protocol Marshall but I do not think it's a serious talk. I also know professor Gerald Domingue’s research, I have great confidence in him instead. Do you know why Domingue retired so early?

Let me stay in touch, bye from Italy!

Fava

 

[xchocoholic]

Has she looked at the low oxalate diet ? Many with ic benefit from this. It keeps my bladder and pelvic
pain away. In addition to the diet, B6 and magnesium can help. Quantity is patient dependant. I need 250 mg
B6 once a day and Doctor's best chelated magnesium twice a day if I want to cheat and eat oxalates.

I still watch ox intake tho because while this stops
pelvic pain for me and is recommended by the vulvodynia association, it may not prevent kidney stones. You can find this info by googling b6 pelvic pain. Or tread thru the yahoo trying low oxalate board.

The low ox diet is recommended for some of us with leaky guts because we can't process these. Food
intolerances have to be addressed too tho in order to reduce inflamation so the gut can heal.

Eating yogurt with additional probiotics added keep me from feeling so thirsty. This should help her digestion
too. Fem dophilus is designed to help too as is AZO cranberry w probiotics. The reg azo burns my bladder so she may want to avoid that one.

She may he drinking too much water and causing her electrolytes to become depleted.

I'm wondering about the yellow tongue. Has she been evaluated for nutritional deficiencies ? Or excesses ?
Maybe too much beta carotene ? Out of curiosity, has she tried drinking cranberry juice for this ? It
inhibits e coli but also gives the tongue a good bath. Lol. Tc .. X

 

[fava]

Has she looked at the low oxalate diet ? Many with ic benefit from this. It keeps my bladder and pelvic
pain away. In addition to the diet, B6 and magnesium can help. Quantity is patient dependant. I need 250 mg
B6 once a day and Doctor's best chelated magnesium twice a day if I want to cheat and eat oxalates. I still watch ox intake tho because while this stops
pelvic pain it probably won't prevent stones. You can find this info by googling b6 pelvic pain. Or tread thru the yahoo trying low oxalate board.

The low ox diet is recommended for some of us with leaky guts because we can't process these. Food
intolerances have to be addressed too tho in order to reduce inflamation so the gut can heal.

Eating yogurt with additional probiotics added keep me from feeling so thirsty. This should help her digestion
too. Fem dophilus is designed to help too as is AZO cranberry w probiotics. The reg azo burns my bladder so she may want to avoid that one.

She may he drinking too much water and causing her electrolytes to become depleted.

I'm wondering about the yellow tongue. Has she been evaluated for nutritional deficiencies ? Or excesses ?
Maybe too much beta carotene ? Out of curiosity, has she tried drinking cranberry juice for this ? It
inhibits e coli but also gives the tongue a good bath. Lol. Tc .. X

Dear Xchocoholic,

thank-you very much for your interesting answer. Please, could you tell me:

1)What is the oxalate-free diet for IC ?



2)Before starting this diet with vit. B6 and magnesium, did you suffer considerable bladder discomfort?



3)Does this diet improve your gut?



4)Did yogurt and probiotics help you from feeling thirsty?



Really thank-you in advance for your clear answers,

Kind regards from Italy!



Fava

 

[fava]

HI Fava

I have known about L-form bacteria for a long time, from reading all about the Marshall Protocol, a chronic disease treatment protocol devised by Prof. Trevor Marshall. Marshall believes that L-form bacteria cause a number of diseases, including ME/CFS, but this is a very controversial idea, and there is no proof as yet.

Professor Gerald J. Domingue is the researcher at Tulane University who has been studying L-form bacteria for the last 30 years. The study of L-form bacteria and their link to disease is a scientifically controversial area. Prof Domingue's work has implicated L-form bacteria in several kidney-related diseases including pyelonephritis, glomerulonephritis, idiopathic hematuria, and interstitial cystitis.

There is no proof as yet that L-forms cause interstitial cystitis or these other diseases, since association does not imply causation. I did not say that L-forms cause interstitial cystitis. It is just a possibility that L-forms might be the cause interstitial cystitis.




The antibiotic treatment of L-form bacteria UTIs recommended by Professor Domingue is as follows:

View attachment 4655

Source from page 138 of the book: Cell Wall Deficient FormsStealth Pathogens. Lida H. Mattman.

Dear Hip,

excuse me, in that book are there others pages of antibiotic protocols for urinary problems(suggested by prof. Mattman and Domingue)against more bacteria which produce L-form bacteria?
Thanks in advance,

kind regards,

fava

 

[xchocoholic]

Dear Xchocoholic,

thank-you very much for your interesting answer. Please, could you tell me:

1)What is the oxalate-free diet for IC ?

Imho, it's best to google low oxalate diet so you get the whole picture. It may look complicated but as with any other diet, it's just a matter of learning the details. I'm on a mostly Paleo low ox diet to avoid toxins.

2)Before starting this diet with vit. B6 and magnesium, did you suffer considerable bladder discomfort?

Yes, I had vulvodynia and kidney stones too. The B6 and mag I didn't start until a year or so after I started the diet because I didn't know about it. Info is on the vulvodynia board for sure but may be on IC board as well. It's on the yahoo trying low oxalate board but imho, that one's harder to read.

AZO with probiotics or a similiar product may help too.

3)Does this diet improve your gut?

My gut was already in better shape from 2 years of the GFCFSFCF + chemical free diet. I'm a celiac who ate gluten for 50 years so I don't expect complete healing to happen now. I'm on some digestive enzymes because my cdsa says I'm low.


4)Did yogurt and probiotics help you from feeling thirsty?

Yes. I'm using a combo of yogurt and probiotics, 2 - 3 Blue bonnet capsules with FOS at this point. And it does help me feel less thirsty. It's been a few years since I googled all this but it has to do with saliva. I just knew that I was hydrated and didn't need liquids, I needed saliva.

Also, don't rush to drink if you're feeling thirsty and you've had plenty to drink. Your mouth will automatically produce saliva as needed to eliminate a dry mouth. Saliva is good for us.

I always let the bacteria eat the yogurt for a little bit to make sure the bacteria are alive. Kefir alone should work too. Yogurt is less potent than kefir so that's why I add the probiotics to it.


Really thank-you in advance for your clear answers,

Kind regards from Italy!



Fava

Hope this helps ... x

PS. Reworded above post to read this way ..

I still watch ox intake tho because while this stops
pelvic pain for me and is recommended by the vulvodynia association, it may not prevent kidney stones. You can find this info by googling b6 pelvic pain. Or tread thru the yahoo trying low oxalate board.