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Aerose91
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Date Joined Feb 2016
Total Posts : 546
   Posted 3/22/2018 2:41 PM (GMT -6)   
I know im going out on a limb here but i want to inquire and see if any of you guys are familiar with my peculiar relationship to salt. I apologize if this is long

**takes deep breath**

I know I'm chronically dehydrated because of my low ADH but if i dehydrate myself further it will make all my psych symptoms worse- dissociation, light/sound sensitivity, muscle weakness, hallucinations, loss of coordination etc.

Now, you may be telling yourself; "hey, just drink some electrolytes and you'll pop back" I wish that conventional wisdom worked.

Salt, depending on when i take it, how much i take and what i take it with can open up the doors to either of heaven or hell

I get worse after eating, bar none, every time. Lights get brighter, dissociation gets thicker, thinking slows down, mood plummets etc. However, eating a ton of salt with meals will mitigate this somewhat, so that's what i do. I can take salt inbetween meals but only with potassium in a 3:1 ratio, K:NaCl. However, if i get dehydrated for some reason and my symptoms get worse, it doesn't matter how much salt, potassium, magnesium, calcium i take in, i will never recover to the level i was at before. I did a few liver flushes 2.5 years ago and the dissociation and light sensitivity got WAY worse. All the electrolytes I've taken in since then haven't mattered, to this day i still haven't recovered. Too many coffee enemas will garner the same result

If i drink salt alone, without food, that's when i can do real damage. The more salt i take in water, away from any other electrolytes, the more long term damage i can do. First few sips, ill start losing my coordination for fine things like handwriting. If i drink more, my gait will go and i may not be able to walk. I'll also become weak and start trembling. Then, I'll develop paranoia and incredible OCD. If i take in any more than that it will trigger some weird digestive problems- terrible diarrhea and an inability to handle any food at all. Along with this will come brutal anxiety and panic. Oddly, taking binders will mitigate some of these symptoms

Here's what's also weird. If i trigger those symptoms, which i have in the past, i can't just stop drinking salt and all goes back to normal. That's how i stay. Last time that happened was last June and my digestion, anxiety and dissociation have never fully recovered.

If i drink regular water in between meals, as i do now, lights get brighter and the dissociation gets worse. I just can't risk drinking salt water.

I've researched pyroluria, porphyria and other stuff which seem possible but doing the therapies for them don't help.

Has anyone else experienced anything even closely resembling this?

goshawk
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   Posted 3/22/2018 4:41 PM (GMT -6)   

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1996
   Posted 3/22/2018 10:14 PM (GMT -6)   
I had some weird issues with water but not like what you described. Aren't you seeing the bartonella doctor now? Have you asked him about this? I'm sure there's a scientific explanation. I just don't know what it is.

When my symptoms first started in 2009, I had extreme thirst and everything tasted salty, even my tongue and saliva. I drank water all day and all night trying to relieve it. I continued drinking excessive amounts of water for many years after that, though the saltiness came and went randomly. I never found an explanation.

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 383
   Posted 3/22/2018 10:19 PM (GMT -6)   
I had the exact same thing. I always thought it was because I was on the Marshall Protocol (which I would not recommend) I thought it was the blood- pressure medications at too high doses that were screwing me up. Other people never had the same problem as me who were taking the same amount though, so maybe it is something the Lyme does. I thought I had an adrenal problem, but I guess I didn't because the endocrinologist never said anything about it to me.

For me what helped me was going to the hospital and they put me on a IV. I was hallucinating for a week, but then I got better. It was terrible. They had to limit my water intake, and my kidneys weren't working right. I think the IV minerals were the only thing that helped.

But the strange thing with the salt ended up going away. In I think a month or two. I've had episodes of dehydration and salt cravings since then, but if I eat something salty they go away quickly. Also I was very underweight so that probably contributed to everything. The only lingering symptom is that ever since then I have a bartonella rash. I'm not sure why.

I've also thought of porphyrias. But I'm not sure exactly how I would be diagnosed with one. I know there is some kind of genetic problem in the family though.

I know this is kind of long, but I hope it is helpful.

A few questions:

Have you gotten your mineral levels in your blood tested? Maybe you are low on a mineral. I was very low on sodium.

Have you gotten your adrenal hormones tested? Is ADH adrenal hormone? Maybe that is what is causing the salt cravings. Could you take some natural adrenal hormone supplements?

Are you on any medications that are affecting your mineral levels? You could ask your doctor. Also you could look into leaky gut. That might cause diarrhea.

Are you losing weight? My problem was that the whole salt thing or something was making me lose weight very fast. I just couldn't eat.

I would say the best thing would be to go to a doctor and get some blood tests. Hopefully you aren't as bad off as I was.

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1996
   Posted 3/22/2018 10:40 PM (GMT -6)   
My ADH was low when it was checked 1 1/2 years ago. Hasn't been checked since. My blood sodium levels are always right at the edge of normal on the low end.

MooseSafari
Regular Member


Date Joined Jan 2018
Total Posts : 78
   Posted 3/23/2018 5:07 AM (GMT -6)   
Hi, this is very interesting. I have been experienting with increasing my salt consumtion for about a month or so and I have gained back weight because of it. At first I thought it improved my dizziness and other symptoms too but it isnt any more. The weight have increased though..

When you add salt, does it contain iodine or not? I have learned foods that are high in iodine increases levels of thyroid hormone that can explain a lot of my sickness..
I am now just trying to compare different salts and see if it has an impact...

Aerose91
Veteran Member


Date Joined Feb 2016
Total Posts : 546
   Posted 3/23/2018 11:03 AM (GMT -6)   
MooseSafari said...
Hi, this is very interesting. I have been experienting with increasing my salt consumtion for about a month or so and I have gained back weight because of it. At first I thought it improved my dizziness and other symptoms too but it isnt any more. The weight have increased though..

When you add salt, does it contain iodine or not? I have learned foods that are high in iodine increases levels of thyroid hormone that can explain a lot of my sickness..
I am now just trying to compare different salts and see if it has an impact...


I only use unrefined salts; Himalayan salt, real salt, celtic salt etc..

Aerose91
Veteran Member


Date Joined Feb 2016
Total Posts : 546
   Posted 3/23/2018 11:06 AM (GMT -6)   
Notime4lyme said...
I had the exact same thing. I always thought it was because I was on the Marshall Protocol (which I would not recommend) I thought it was the blood- pressure medications at too high doses that were screwing me up. Other people never had the same problem as me who were taking the same amount though, so maybe it is something the Lyme does. I thought I had an adrenal problem, but I guess I didn't because the endocrinologist never said anything about it to me.

For me what helped me was going to the hospital and they put me on a IV. I was hallucinating for a week, but then I got better. It was terrible. They had to limit my water intake, and my kidneys weren't working right. I think the IV minerals were the only thing that helped.

But the strange thing with the salt ended up going away. In I think a month or two. I've had episodes of dehydration and salt cravings since then, but if I eat something salty they go away quickly. Also I was very underweight so that probably contributed to everything. The only lingering symptom is that ever since then I have a bartonella rash. I'm not sure why.

I've also thought of porphyrias. But I'm not sure exactly how I would be diagnosed with one. I know there is some kind of genetic problem in the family though.

I know this is kind of long, but I hope it is helpful.

A few questions:

Have you gotten your mineral levels in your blood tested? Maybe you are low on a mineral. I was very low on sodium.

Have you gotten your adrenal hormones tested? Is ADH adrenal hormone? Maybe that is what is causing the salt cravings. Could you take some natural adrenal hormone supplements?

Are you on any medications that are affecting your mineral levels? You could ask your doctor. Also you could look into leaky gut. That might cause diarrhea.

Are you losing weight? My problem was that the whole salt thing or something was making me lose weight very fast. I just couldn't eat.

I would say the best thing would be to go to a doctor and get some blood tests. Hopefully you aren't as bad off as I was.


Wow, glad to hear you got out of it. Was your recovery from getting several IV's or treatment of the infections?

I've been taking minerals for darn near 7 years now. Anytike ibtest low for one i supplement it- Manganese, molybdenum, zinc, magnesium. I take them but nothing has ever helped

Aerose91
Veteran Member


Date Joined Feb 2016
Total Posts : 546
   Posted 3/23/2018 11:16 AM (GMT -6)   
WalkingbyFaith said...
I had some weird issues with water but not like what you described. Aren't you seeing the bartonella doctor now? Have you asked him about this? I'm sure there's a scientific explanation. I just don't know what it is.

When my symptoms first started in 2009, I had extreme thirst and everything tasted salty, even my tongue and saliva. I drank water all day and all night trying to relieve it. I continued drinking excessive amounts of water for many years after that, though the saltiness came and went randomly. I never found an explanation.


Yes, I'm seeing Dr M now. I briefly mentioned this and he is aware of the low ADH issue but we didn't get into it more than that. Tbh this is probably #10 on my list of debilitating symptoms, even as bad as it is.
Oddly enough, i rarely get thirst anymore or salt cravings. I just know i need to take it so i do

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 383
   Posted 3/23/2018 12:56 PM (GMT -6)   
It's good you are taking lots of minerals. I don't think I was taking enough. I wasn't really under the supervision of a doctor, and I probably wasn't taking enough minerals and it got really bad because I just kept not addressing it. Throughout my whole illness I've been learning not to keep ignoring problems.

I did not do anything to treat the infections, because of course the lyme test they did was negative, but the IVs got my mineral levels back. I still was having very severe symptoms, but I thought it was the dehydration or something.

I don't think eating more salt will actually get rid of the lyme, but I think not being dehydrated can help you get better quicker.

MooseSafari, I don't think a lot of natural salts contain enough iodine to have an effect. It seems like you need a lot more iodine if you are low. I take wakame flakes, instead of an iodine supplement. It says on the package that it contains 600% of your daily value of iodine. At first I was taking a teaspoon or two a day, but now I'm only taking maybe a quarter teaspoon. I've heard sometimes seaweed can cause headaches because of some kind of natural MSG, but I haven't had any problems.

Aerose91
Veteran Member


Date Joined Feb 2016
Total Posts : 546
   Posted 3/23/2018 2:53 PM (GMT -6)   
Lately I've been thinking more and more that there has to be something else going on with me. This has been utterly horrific for 6.5 years, and after 8 months of very high doses of Buhner herbs for bartonella, nothing has changed.

My insane dissociation, psychosis, salt issues, histamine intolerance.... all make me wonder if there's something on top of the infection(s) holding me back. That's why im so curious about pyrolria, porphyria and stuff like that

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1996
   Posted 3/23/2018 2:59 PM (GMT -6)   
Aerose91 said...
Lately I've been thinking more and more that there has to be something else going on with me. This has been utterly horrific for 6.5 years, and after 8 months of very high doses of Buhner herbs for bartonella, nothing has changed.

My insane dissociation, psychosis, salt issues, histamine intolerance.... all make me wonder if there's something on top of the infection(s) holding me back. That's why im so curious about pyrolria, porphyria and stuff like that


If I were you, I'd pick that doctor's brain as much as I could while I had the chance.

NotQuiteAntonio
Veteran Member


Date Joined Jan 2015
Total Posts : 1149
   Posted 3/24/2018 11:03 AM (GMT -6)   
Some of those symptoms sound like what's experienced with electrolyte imbalances. Also, you mentioned needing to eat sodium in combination with potassium. I can't explain the science, because I'm forgetful, but they play off one another in the body. Sodium-potassium pumps.

A normally functioning person consuming a balanced diet should be getting all of the necessary vitamins and minerals.

The fact that you're craving salt means something in your body needs it in some way. I mean, there's always the "I like salty foods" aspect that plays a part, but you know what I mean. I'm thirsty, because my body needs fluids. I'm hungry, because I need fuel. I want some salt, because X.

Low antidiuretic hormone. You're diuresing too much of your fluids. Though, being dehydrated would cause those electrolytes to become concentrated in the body, correct? Do you drink a lot of water to offset that? You've had lab work done, like a BMP? What were your most recent results?

You said, it doesn't matter how much I take it - just as things like hyponatremia, hypomagnesemia exist, so do hypernatremia, etc. You can have too much as well.

If you're really curious about your fluid balance, do an intake and output on yourself, see what the balance is between the two. Get a urinal, measure it all out.

I've never had issues quite like this. Though, I have washed out too many of my electrolytes before, leading to change in LOC, palpitations, muscular issues, etc. I've been hospitalized for it. I used to measure my intake, but now I just drink when I'm thirsty and hold off when I start to feel... just an aura of too much fluid volume, I guess.

This is a very interesting case. I wish I could help more. My brain's not so good. I can't pull all the information out I'd like for you. It's like your body is not regulating your electrolyte balance properly. The low ADH would cause that, fluid balance.

Hormonal issue. Hypothalamus, pituitary gland.

What's that disorder that causes low ADH, diabetes insipidus?

As for the rest, there's a lot of things that could be layered on top of one another, holding you back, like you said. It's crazy.

Leaky gut, parasites, Bart, etc.

I'm sure you suffer from something more, yeah. That's the problem for a lot of us. I wish I could help.

Best wishes
Do the work, be the prize.

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 383
   Posted 3/24/2018 1:21 PM (GMT -6)   
Which herbs are you using for bartonella? Some of Buhner's bartonella herbs didn't seem to work so well for me. Boneset seemed to work the best.

I did feel like I was getting diabetes when I was having trouble with salt cravings, but maybe it was just because I was too thin.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1996
   Posted 3/24/2018 2:10 PM (GMT -6)   
I just came across this. I had seen Antonio's post earlier, and when I saw this about aldosterone, it rang a bell.

www.holistichelp.net/adrenal-fatigue.html

Aerose91
Veteran Member


Date Joined Feb 2016
Total Posts : 546
   Posted 3/24/2018 2:20 PM (GMT -6)   
NotQuiteAntonio said...
Some of those symptoms sound like what's experienced with electrolyte imbalances. Also, you mentioned needing to eat sodium in combination with potassium. I can't explain the science, because I'm forgetful, but they play off one another in the body. Sodium-potassium pumps.

A normally functioning person consuming a balanced diet should be getting all of the necessary vitamins and minerals.

The fact that you're craving salt means something in your body needs it in some way. I mean, there's always the "I like salty foods" aspect that plays a part, but you know what I mean. I'm thirsty, because my body needs fluids. I'm hungry, because I need fuel. I want some salt, because X.

Low antidiuretic hormone. You're diuresing too much of your fluids. Though, being dehydrated would cause those electrolytes to become concentrated in the body, correct? Do you drink a lot of water to offset that? You've had lab work done, like a BMP? What were your most recent results?

You said, it doesn't matter how much I take it - just as things like hyponatremia, hypomagnesemia exist, so do hypernatremia, etc. You can have too much as well.

If you're really curious about your fluid balance, do an intake and output on yourself, see what the balance is between the two. Get a urinal, measure it all out.

I've never had issues quite like this. Though, I have washed out too many of my electrolytes before, leading to change in LOC, palpitations, muscular issues, etc. I've been hospitalized for it. I used to measure my intake, but now I just drink when I'm thirsty and hold off when I start to feel... just an aura of too much fluid volume, I guess.

This is a very interesting case. I wish I could help more. My brain's not so good. I can't pull all the information out I'd like for you. It's like your body is not regulating your electrolyte balance properly. The low ADH would cause that, fluid balance.

Hormonal issue. Hypothalamus, pituitary gland.

What's that disorder that causes low ADH, diabetes insipidus?

As for the rest, there's a lot of things that could be layered on top of one another, holding you back, like you said. It's crazy.

Leaky gut, parasites, Bart, etc.

I'm sure you suffer from something more, yeah. That's the problem for a lot of us. I wish I could help.

Best wishes


I do have low ADH, i believe diabetes insipidus is the medical term. My doc is familiar with it but i wonder, can that alone cause all this? Every time I've had ADH tested it hasn't even registered.

I drink at least a gallon if water per day. The issue is that it goes straight through me. The only way for me to feel like im retaining anything is to take it with salt, but then i have to be weary about how much potassium im taking alongside it.

I hope it's just bart causing all of this but that seems so far reaching to me. Dr M concluded that i have mast cell issues but i know that has to be caused by something. Bart alone? I dont know

@Notime4lyme

I used every one of Buhner's herbs in his new book for bart. I had significant die off when i started the houttinoya but then nothing happened- no improvement. I got to the point where i was taking massive doses for 8 months and still, no change. Im now on clarithromycin and rifampin as well. It makes me wonder if i have babesia as well, or porphyria or something. There has to be something else because i don't see anyone in the lyme community have as serious of psychological issues and exercise intolerance as me, nor for as long as I've had them. I've tried comparing my SPECT scan to others and no one even closely rivals it. Not that this is a competition, i just have never found anyone i can relate to or bounce ideas off of. It really sucks
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