posted
Our adult daughter has chronic Lyme, not yet treated. She also has excessive thirst, drinking almost 2 gallons of water per day, on top of all her problems with lyme symptoms.
Drs have ruled out diabetes mellitus, diabetes insipidus, and kidney dysfunction. They don't know what to think, except that maybe it's "all in her head"
Does anyone know of a link between Lyme/co-infections and constant thirst? Or is this likely to be a completely separate problem?
Posts: 228 | From Mass. | Registered: Feb 2009
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nenet
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Member # 13174
posted
I believe that is also a symptom of Lyme and also of some coinfections. I have it and many others here do as well. Can't say for sure of course if hers is being caused by Lyme or coinfections or somethig else, or a mix of all 3.
I think I drink about 1.5 gallons of spring water a day, and the only other thing I drink is herbal medicinal tea (2 cups a day) and almond milk (about 16 ounces a day).
You want to make sure she is getting plenty of salt, potassium, magnesium, and calcium. It's good to stay hydrated and flush out the lyme and coinfection toxins, but you need to make sure to get your daily requirements of minerals. Sometimes lack of some of these minerals can cause more thirst as well.
If she can eat more cruciferous vegetables, beans, bananas, nuts, berries, wild caught fish, etc. that can help up her minerals naturally.
This is just a suggestion, there can be other things that can cause this. Also, she could have a malabsorption problem due to the Lyme, which could be causing a loss of nutrients needed to stabilize body fluids. Treatment and proper nutritional support can still be helpful no matter what.
Hopefully some more people can add their experiences and knowledge here. I'm sorry I don't know much about this beyond what I posted. ---
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Yes, I've had this for years - doctors tested me for diabetes, then did the "it's all in your head routine."
If you read Dr. Richie Shoemaker's books or online articles (he's written the book Mold Warriors, has a website on chronic neurotoxins, etc.) he described the thirst as I think an MPH deficiency (I'm trying to do this off memory, I don't have my book here)- it's a hormone that it not FDA approved in the U.S.
I've also read books by Chronic Fatigue Syndrome doctors and I remember one stating that when he sees a patient walk in with a water bottle, he knows they have CFS. And as we Lyme patients know, many CFS patients are really Lyme.
Even one of my mainstream endocrinologists said there was something wrong with my autonomic nervous system and that's why I had dry mouth all the time.
Even three alternative practitioners I went to said I had dehydration problems despite drinking so much water - and this was before I knew I had Lyme.
I still drink tons of water (to the point that lab technicians get upset that my urine isn't concentrated enough) but I seem to have less thirst as Lyme treatment continues.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Leelee
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posted
I suspect excessive thirst is part and parcel with some people who have Lyme.
I'm not officially diagnosed (yet), but the last few years I can't get enough water to drink. People always jokingly comment on my water intake, but honestly, I need it.
I always, always, always have to have a water bottle with me. I buy the gallon jugs and probably drink about one a day.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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btmb03
Unregistered
posted
Great answers/advice above...just as they can't measure B-12 in the brain (without doing a biopsy), they cannot accurately measure the interconnections between aldosterone, vasopressin, etc..seems to all be related to the HPA axis dysfunction.
This was one of my first symptoms and still is...I can't add anything to the great advice you've already rec'd, just know your daughter is *not* alone and no, it is not AIHH!
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posted
I also have excessive thirst and was told that I am drinking almost 10 times the amount that I should be. If I try to cut back then I suffer from symptoms of dehydration.
Glad that I am not alone in this! I would love to know the actual cause....
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
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I've struggled with the same problem as your daughter the past several years (expected lyme-n-co also untreated thus far in my case).
Taking DDAVP tablets has been a real blessing for me. I still find that when I'm severely fatigued with face flush etc, then water is still my saving grace. But in general, I'm not sure I'd have gotten through some recent impairments (likely caused by lyme-n-co) without the DDAVP helping me out.
Feel free to PM me if you'd like more details.
All the best, -s
Posts: 10 | From USA | Registered: Jan 2009
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posted
Btw, I believe that this idiopathic central DI presentation in several lyme patients isn't just pure coincidence - note that Bruscanno describes the impact of lyme on impairing Pituitary function.
The pituitary is responsible for the production of ADH (anti-diuretic hormone). In the absence of ADH production one ends up with excessive thirst and excessive urination. I had undetectable ADH levels when my endocrinologist tested.
Posts: 10 | From USA | Registered: Jan 2009
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Ocean
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posted
wow, this is interesting! I never drink enough water. I often forget and usually don't drink anything until about 3 or 4 in the afternoon. Course I eat fruit and veggies though too.
2 gallons per day is quite a bit though. Are her electrolytes OK?
as long as e-lytes are within normal range, I suppose it wouldn't hurt. That is a lot of fluid though.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
This may come as a shock, BUT a lot of us are SALT DEFICIENT. Salt deficiency has been linked to chronic infection. Salt helps hold the water so our bodys can hold onto it.
I am speaking about Sea Salt which is very close to our own saline. Table Salt is poison for us. We need salt!!
The AMA has people so afraid of salt that we have become deficient. It also supports the adrenal glands which helps with fatigue.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
pls. do be careful she does not overdo the water intake.
look up water intoxication for info
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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bettyg
Unregistered
posted
is your daughter on any prescription meds now? HOW MANY? each of my RX meds CAUSED DRY MOUTH!
i can't get enough and have a huge mug of water that goes everywhere for me.
when i wake up at night, i have to drink more and now that i'm using a cpap breathing machine; my throad is EVEN drier with the humidifier too.
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Cass A
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posted
I have noticed a thirst issue, also.
One of the key things that I do when I need more water is to take electrolytes.
Salt pills usually have the proportions backwards--you need about 2 to 1 Potassium (elemental) to Sodium (elemental). Most "salt pills" are very high in sodium.
I found a great product some years ago--Electrolyte Stamina by Trace Minerals--which is made from kelp, alfalfa, salts from the Great Salt Lake, and trace elements. It works GREAT!!!!!!! It cuts down on thirst and my energy revives within minutes!
I take two at a time--my husband takes only one at a time, although the "serving size" is 6, and the manufacturer recommends 4-10 tablets daily. I have rarely had to take 6 in an entire day.
Hope this helps!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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quote:Originally posted by Jill E.: If you read Dr. Richie Shoemaker's books or online articles (he's written the book Mold Warriors, has a website on chronic neurotoxins, etc.) he described the thirst as I think an MPH deficiency (I'm trying to do this off memory, I don't have my book here)- it's a hormone that it not FDA approved in the U.S.
I've also read books by Chronic Fatigue Syndrome doctors and I remember one stating that when he sees a patient walk in with a water bottle, he knows they have CFS. And as we Lyme patients know, many CFS patients are really Lyme.
I have the exact same problem. Since I was about 14 years old (and I'm 31 now), I have had excessive thirst (and I don't have diabetes). My friends in junior high used to call me "the sponge." I get dehydrated very easily and take a water bottle with me everywhere.
I drink lots of water everyday, and used to drink probably a gallon per day. I told my doctor that and she said that was way too much, so I started measuring and counting my water intake and trying to limit it to six to eight 8-oz glasses of water per day.
It is bad to drink too much water -- water intoxication can result. When I was traveling in Europe 3 years ago, I got hot and dehydrated and drank way too much water in a short amount of time. This happened twice and I had to be hospitalized both times. But I was really sick already, so that much water just made me worse.
Dr. Shoemaker is an expert on this topic. He has studied melanocyte-stimulating hormones (MSH), hormones in your brain that regulate pituitary function. His book "Mold Warriors" goes into detail about this.
We know that the Borrelia infection depletes our body's hormones. When you have Lyme, you have low MSH. When MSH is deficient, it can't produce the right amount of ADH (anti-diuretic hormone).
ADH helps to keep the right amount of water in our body. When ADH is deficient, the kidneys can't keep you from losing water, so you begin to urinate more. This causes dehydration, making you thirsty all of the time.
Dr. S wrote in his book "Mold Warriors" that he counts how many bottles of water patients bring into his office for a 2-hour visit. If they have 2 bottles of water, he knows they have low ADH.
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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posted
Oh yeah, something good to take is Trace Minerals -- it's a bottle of liquid with a dropper. I was told to put 30 drops into 64 oz of water.
You can also buy bottled "Smart Water" or Electrolyte Water. Just look for water that don't have any added sugar in it.
"Smart Water" is available at the regular grocery store and Whole Foods carries the Electrolyte Water.
What Cass A suggested may be even better. I may have to try that.
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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posted
This is probably a lack of the hormone aldosterone. Like some others mentioned, it is common in CFS, and according to Dr. C, also in lyme.
I had this problem REAL, REAL bad and had to drink heavy doses of salt water all the time. It is important not to drink too much water w/o salt. It makes the problem worse. Florinef helped me some with symptoms, but thankfully, this is one problem that has largely resolved with treatment. I never thought it would go away, but it did, and I had it as bad as I could imagine anyone having it.
Posts: 375 | From Southeast | Registered: Sep 2002
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posted
Thank you to those with recommendations. In my experience I am on NO meds, drink 10 x's the amount I am supposed to, and have had adrenals checked.
Maybe time for a re-check?
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
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Hoosiers51
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posted
This is a big issue for me too. I drink TONS of water, and urinate a lot too. One of the many things I need to look into more.
Is there any kind of mineral panel lab test where it would tell us what mineral we're deficient in (so we can start adding it), or is it just potassium/sodium or that hormone aldosterone?
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I remember a medical mystery program I saw a while back.
The young woman had been in a car accident but didn't suffer any severe injuries. Over time, she started having excessive thirst. She always had a large cup of water with her and had to wake up in the middle of the night every hour or so to drink. Afraid that she might have a brain tumor, she put off getting medical attention.
When she finally, saw a doctor they at first thought her dependence on water was psychological as I believe testing for diabetes came back negative. They put her in the hospital and denied fluids, within an hour her body started to go into shock.
They finally put two and two together and realized that the car accident she had been in a couple of years prior had somehow affected her pituitary gland and she no longer produced a needed hormone to regulate the fluids (could have been aldosterone - I'm working off of an old memory here).
Definitely sounds like a disregulation of some sort in your daughter's case.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
Jill, I bet your 3 alternative care providers were right. We took my daughter to a chiropractor who does live blood cell analysis with a dark-field microscope, and we got to see her RBC's with our own eyes.
Many of them had very spiky cell walls, you could see they wouldn't be able to perform normal cell membrane functions. They looked horrible. He said dehydration was the cause.
And she drinks almost 2 gallons of water per day. From reading all these posts it now makes sense.
Posts: 228 | From Mass. | Registered: Feb 2009
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posted
I've drunk water like a fiend since I've been ill. Honestly, I never put it together with the LD before - this thread is a real eye opener. It's not as extreme as some posting here, but definitely a big change, definitely noticeable, and DEFINITELY a 'have to'. I just have to drink a lot of water. Yesterday at lunch I drank the HUGE size bottle of Pelligrino all by myself - and that's not unusual at all. My friend asked me what was up! Now I know - just more fun thanks to LD.
I guess what's really interesting to me on this is that I am waaaaaayyy better now, after treating for two years, but the thirst is the same?
otm
Posts: 314 | From east coast | Registered: Oct 2007
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I have had dark field microscopy done many times by the doctor I used to see, and I know what you are talking about when you say "spiky cell walls." I had those also.
Those are actually crenated red blood cells (it just means they have died off). It doesn't mean anything bad about the cells.
Your chiropractor may have been seeing something else in your daughter's blood that led him to say that she was dehydrated.
Maybe her red blood cells were clumped together? I'm not sure if that would be an indication of dehydration. But at least he picked up on it.
electrolite
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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posted
I guess the dead cells do get resorbed. But when you see the spiky cell walls, that means that those cells are in the process of dying off.
So the cells clumping together IS dehydration. I had that too (sometimes it was better than others).
Yes, it is very cool to see your own blood cells!
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I never saw my red blood cells, the alternative practitioners had used varying types of muscle testing/kinesiology/energy work on me and each said I was dehydrated or there was something terribly wrong about how my body used water.
In a recent methylation cycle test I had for detoxification problems, the lab commented about my having leaky cells so who knows if this is all related.
Personally I think the MSH/pituitary connection makes the most sense to me, because Lyme and coinfections have caused all kinds of havoc with my endocrine system, as is common with many patients.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
I have increased thirst but did have my adrenals tested and it all came back normal. What type of pituitary abnormalities would show up on testing if the thirst is pituitary-related?
Thanks to all who have replied!
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
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map1131
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posted
This is the first time I've seen (remember) a post on others being as dehydrated as myself. I also drink tons and have for several years.
Some family members have heard my water consumption is dangerous? They are barely or rarely water drinkers.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
The pituitary testing my endocrinologist performed was - ADH levels, serum osmolality, urine osmolality and electrolyte panel, all must be done at the same time. Also helps if you take a 2-3 day chart on fluid intake and voided... if you don't have this, they make ask you do some other 24 hr testing.
The synthetic hormone to substitute the absence of ADH is called desmopressin (DDAVP) and can be taken either as a nasal spray or tablets.
Indeed intesting to hear that others have had this problem too. I'm still waiting on my first LLMD visit. However, my neuro had commented that she could fit all my problems with lyme except the idiopathic central DI... glad to hear that I may not be that rare after all.
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