The following is a post featuring my opinions and research I’ve done. I’m not a medical professional. So I’m not going to try to make any sort of definitive link between MECFS, lyme disease and diabetes insipidus. I’m merely going to share my thoughts and experiences.
I recently came across an AP news report on IV “bars,” and how seemingly healthy people use them for a number of reasons. They interviewed one woman who goes in for an IV every time her Lyme disease symptoms flare up. She said it helps her to function while her symptoms are worse. Another person, a man I guessed to be in his late-twenties, said getting IV hydration cures his hangover — within 30 minutes it’s like he never went out partying the night before.
This story immediately resonated with me because I go out partying pretty much every night and can never kick my hangover the next day. Just joking. But seriously, it resonated with me for a couple reasons: (1.) because MECFS often makes me feel hungover, or much worse, if I don’t get IV hydration everyday, or at least twice a week, and the feeling is usually worse if I overexert myself. But also, the story resonated with me because (2.) I’ve been getting IV saline (and sometimes vitamins) for a year now and, within that time, I’ve gone from aphonic, eating through straws, and unable to elevate my body, to now consistently improving with every infusion.
I don’t want to come off as sanctimonious — pushing IV treatments on anyone. Everybody has a different body, and some people have different reactions to treatment, so whether you are healthy or have MECFS, Lyme disease, or another condition, IV hydration may not work for you. Over the last several months I have talked with people who have seen no benefit and people who have seen their health improve with IV therapy. I have rarely talked to people who have had a negative reaction, although I’m sure it happens all the time, especially with a more complex compound than simple saline.
Do It Yourself?
One of the main arguments against IV hydration and nutrients is that infection can occur around the insertion site. I totally understand this concern — IVs are invasive after all, but that’s why a nurse should administer the IV and a doctor should prescribe it.
Oh, and this is probably a good time to mention that, although a needle is used to place the IV, what is actually set inside the vein is a tiny catheter tube which infuses the compound into your bloodstream.
Because I’ve been getting IV infusions for such a long time — and I need them and having a nurse come to the house is expensive — my mom and I have been trained to do them.
Having said that, I would never place my own IVs (or have anybody I don’t trust place them). Otherwise, I’m comfortable doing everything else IV related. Lately, I’ve been using a midline IV, a shorter version of a PICC line, which can be left in my arm for weeks. It certainly is convenient, but also feels kind of like having a twig stuck in your arm for a month. The nice part, however, is that it allows me to hook up to a liter bag of saline anytime I want.
It’s actually fairly simple, and if there wasn’t such risk involved, because it’s invasive, I would say anyone could run their own IV. But the truth is, any number of things can go wrong: from an infection at the IV insertion site to too much air getting in the tubing which runs from the bag of fluid to the IV. But thankfully none of these things have happened to me.
Proving The Placebo Effect Wrong
In the AP video there’s an interview with a doctor who seems to be adamant that the benefits of IV hydration are due to the placebo effect. Now, I realize what he said may have been taken out of context and he may have been referring to healthy people who can typically get adequate hydration by simply drinking water, but even so, I feel like an IV with saline and vitamins is more effective at treating hangovers or colds or whatever than just drinking water. I’ve had numerous people suggest I do the latter to save money, or just because the thought of an IV having such a profound salutary effect on my health seems impossible. In fact, my ex-doctor (yeah, he broke up with me) and his staff felt this way and seemed to suggest I might be dependent on the saline, and furthermore, that the effects were either temporary or all in my head. Now, I’m may not be a doctor, but I’m sorry, that’s complete bullshit. And let me tell you why….
First off, I was extremely reluctant to try IV hydration in the first place and my ex-doctor actually had to sell me on it. And once I got the IV it was excruciatingly painful. Still, I kept trying the infusions and after a couple weeks I started to improve. Now, a year later, I’m still kicking ass on the recovery train. Choo-choo!
Also, given my recovery, I think it’s fair to say my body is dependent on saline, and even if I was addicted to the IVs, so what? I’d much rather be addicted to saline than pain killers or anything else for that matter.
I do, however, want to clarify: I believe the placebo effect is real. I think some people experience relief from their symptoms thinking they are taking a beneficial treatment, even when they are not. But I think it’s important to, when talking about the placebo effect, consider the difference between feeling better and feeling cured. It is my opinion that if someone takes a placebo treatment and is cured, well, they must have something else going on, whether it’s hypochondria or attention-seeking. But simply feeling better while taking a placebo, which seems to be the most common occurrence, is more an indication of the tremendous power of the brain.
The aforementioned AP report focuses predominantly on healthy people getting IV hydration. I cannot speak for these people, or even relate much, because I haven’t been healthy in more than half a decade. But for someone like myself, it turns out there is an actual medical explanation for why IV hydration works and oral hydration doesn’t. It’s called diabetes insipidus, and according to UCSF, it is “a rare condition that occurs when the kidneys are unable to conserve water during the process of filtering blood.”
This condition is, of course, different than the diabetes related to blood sugar. Instead, “diabetes insipidus is caused by a lack of anti-diuretic hormone (ADH), also called vasopressin, which prevents dehydration, or the kidney’s inability to respond to ADH.”
This hormone allows the kidneys to keep water in the body. It is made in the hypothalamus area of the brain, and is stored in the pituitary gland.
I only recently came across this information, although my ex-doctor mentioned some of it while I was catatonic, so it didn’t really register in my mind. It’s nice to finally have a name (diabetes insipidus) to go with the condition, which I too was skeptical about at first. My nurse kept telling me that my urine looked incredibly diluted, which I thought was a good thing (as is the case for healthy people), but we both eventually concluded that it’s in fact a bad thing when you have DI because the body does not retain water, and instead quite literally (excuse me) pisses it away.
What I find so fascinating about DI is that the exact opposite applies to healthy people. But when I think about it, it’s only fitting that someone with a disease (MECFS) that goes against so many medical and health care norms also has such a paradoxical secondary condition.
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21 thoughts on “Diabetes Insipidus: A Different Kind of Diabetes ”
I’ve had ME for 21 years but was just diagnosed with diabetes insipidus last year and started taking desmopressin (replacement Anti Diuretic Hormone). What a huge difference that’s made—in comfort if not in energy. I’ve never tried an IV, but my symptoms aren’t anywhere near as severe as yours. Thanks for this useful write-up—and how awesome that the IV’s helping you so much! More power to you.
Hey Stacy! Interesting. My doctor suggested desmopressin. Glad it works for you. I might try it now. I had a bad reaction to midodrine which is kinda similar I think so I’m hesitant but we’ll see. Thanks for sharing your experience!
How did you get the diagnosis? What doctor and test?
I went to an endocrinologist for excessive thirst (20+ glasses of water/day). He did a slew of tests, but the decisive ones seemed to be bloodwork showing high blood sodium and blood osmolality, followed up with a blood test for arginine desmopressin hormone and an MRI showing slight abnormalities in the pituitary gland.
Oh that’s right! Thanks Stacy! I tested very low for ADH too. That’s a pretty solid indicator I think. Lauren, I’d ask your doctor to test your ADH levels. And maybe cortisol too?
I had IV saline from 1997 until 2012? Oh yeah. 2 liters a month, then 3 weeks, then once a week. I had my blood volume tested. It was low, both red call and total blood volume. For the people I know who get saline, they ah..hold it in. I am about 5 foot 2 and 135 pounds. HAH. 2 liters does not pass through. It lingers for about 12 hours. I feel a lot better by then. I already have Autoimmune diabetes, a gift fro the enterovirus I had in 1980. ANYWAY..hurrah for IV saline!
Hey Pat. Yes, it’s interesting. I left that part out but I pee a lot less when I get saline. Fascinating since it’s a liter of liquid. A liter of drinking water would be a totally different story. Anyway. Did you ever have any issues with your blood becoming too acidic?
I’m on midodrine for very low blood pressure and heart rate and it has stopped me fainting all the time – hurrah! But still getting the ME/CFS flu symptoms when I don’t get enough sleep or overdo it. I had to drink 3 litres of water with electrolyte before going on the midodrine and while I felt generally better and my sore flesh improved I was still fainting a lot. This has been an interesting read and has made me think about upping my water intake again. Luckily I bought a tonne of toilet roll yesterday! Ha ha! Thanks Jamison.
Hi Becky. I tried midodrine and had a bad reaction which is why I have to do the IV saline. I’m still trying to find a drug that has the same effects that I don’t react badly to. And I’m not sure if electrolyte water works for me, I’ve tried it in the past but it’s hard to say if it helped. Thanks for sharing!
I had a reaction to the fillers in midodrine so an alternative pharmacy provided one I could tolerate. Perhaps it wasn’t the drug but the fillers? Just a thought.
Do you have any official diagnosis of the diabetes insipius (or whatever it was called) can this be tested or is it what you believe to be going on?
I’ve had such a hard time getting iv saline. Even after a Cardio diagnosis of PoTS and recommendation for saline three drs have refused to help me get it and I can’t travel back to the Cardio for it. Yet they are happy to give drugs!!
Hi Lauren. I think there’s a test for DI but I’m not sure and I’m not able to go in for testing. You might try having your GP or any MD test for dehydration. If you’re dehydrated they should give you a Rx for saline IV. And if that fails, depending on where you live, they have IV “bars” that give them to healthy people or hungover people so you might try that to see if it helps you.
I came across the following serious study done by Griffith University, Gold Coast, Brisbane, Australia regarding ME/CFS which I think you will find very interesting. It looks like a real breakthrough has been made and should be taken seriously:
Clinical & Experimental Immunology: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5217865/
Griffith University breakthrough article: https://app.secure.griffith.edu.au/news/2017/02/21/gold-coast-researchers-make-chronic-fatigue-syndrome-breakthrough/
In a world first, Gold Coast researchers have made an important breakthrough in understanding the cause of Chronic Fatigue Syndrome.
Science Minister Leeanne Enoch said researchers from Griffith University’s National Centre for Neuroimmunology and Emerging Diseases (NCNED) have found strong evidence that chronic fatigue syndrome was associated with a dysfunctional immune system.
“The research team, led by Professor Sonya Marshall-Gradisnik and Professor Don Staines, have identified a dysfunctional cell receptor in the immune system which seems to be at the core of the problem,” Ms Enoch said.
The breakthrough came after researchers from Griffith University identified that patients with CFS/ME were far more likely to have single nucleotide polymorphisms – DNA typos – in the genetic code for certain cell receptor:
Having read this through it makes sense on how you, I and many others have been feeling with all the many symptoms. I’m going to talk to my own doctor about it because before I read this she mentioned the immune system being involved which she has never done before.
Kindest regards, Nicola.
Hey Nicola, thanks for sharing these articles. I read about the Griffith Univ. findings and am pretty hopeful about what it could lead to. It’s definitely progress!
It really does look hopeful. To be able to have a proper diagnosis would be amazing and this I’m sure would lead to treatment 🙂
I agree! A diagnostic test would be huge!
So glad you’re getting better 😀😀😀😀
Thanks! Me too.
I had IV saline for a while and it helped me too but unfortunately I could only get it by going to the hospital 3 times a week to sit in their day ward. So the crash from travelling easily wiped out the improvement from the saline – eventually I got too sick to travel that much and had to stop. It’s almost impossible to get home saline here in Australia, sadly – nobody will approve it.
I do get very positive results from midodrine/florinef/salt/propranalol/coralan (yes all of them together) – went from 100% bedridden to about 20% functioning where I could use my reclining wheelchair to leave the house a few times a week and do all sorts of other fun stuff. Unfortunately it didn’t stop me from getting worse overall so I’m back to pretty much 100% bedridden (can still walk to bathroom but only just) and still declining even though still taking meds. Very depressing.
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My ADH is less than 1. My gp says he doesn’t order IVs. My soon to be previous Cardiologist says “IV therapy does not help, it just goes right through you”. [insert curse word]
I’ve had bad reactions to both Fludrocortisone and Desmopressin (synthetic vasopressin)
My last neurologist would have done IV infusions but she took a research job.
My current TOP neurologist ignores my MECFS and wants to continue Botox for my intractable headaches. Which is likely highly toxic and making me worse.
I have developed more symptoms since starting Botox.
So, I’m awaiting a pricy phone appointment with a MECFS Dr because not 1 dr in my state treats mecfs, successfully.
Out of the loop 2 years now. Not able to work.
Disability has been denied twice.
Note: SSA gives almost immediate disability benefits to drug addicts, alcoholics and AIDS patients regardless of their ability to work.
Have a magical Autumn Jamison.
Let’s beat this illness!
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