Low Dose Naltrexone - Could it possibly help the thirst/dehydration issue some of us suffer from?

[Replenished]

I know there a lot of Low Dose Naltrexone threads already but I'm considering giving it a try and just wondered on the off chance anyone might have experienced relief from the M.E./CFS thirst/dehydration type symptoms when using Low Dose Naltrexone? Or even heard of it helping others in this way.

My main symptom is extreme thirst, dehydration, frequent urination. That to me has always felt the worst although I do have the fatigue and various other horrible symptoms.

So yes, a bit of a random question but it seems LDN is a miracle drug for some and I wondered, if it improves M.E. CFS symptoms generally if it might on the off chance improve this issue with ongoing thirst / fluid homeostasis.

 

[Rufous McKinney]

It might help.

I suffer from extreme dryness, its part of the Yin Deficiency describe in chinese medicine which I often use.

A set of symptoms I was having that were cycling around my mouth and throat, swelling cycles, possibly Angiodema/mast cell type stuff...has calmed down considerably since I use LDN pretty consistently. It as a much huger problem before.

I also take some herbs which are moistening- lung moistening in particular. I find the nattokwinase helps my lung dryness, I might take one a couple of times a week.

But generally- I feel your pain. My bladders a mess, I deal with cystitis and the frequent urination is quite maddening.

Pretty much a nap will be interfered with about every 20 minutes....with rare exceptions.

I would encourage you to try it. Its worth trying and not too costly if you have to pay yourself , which I do because my insurer will not cover compounded.

 

[Replenished]

It might help.

I suffer from extreme dryness, its part of the Yin Deficiency describe in chinese medicine which I often use.

A set of symptoms I was having that were cycling around my mouth and throat, swelling cycles, possibly Angiodema/mast cell type stuff...has calmed down considerably since I use LDN pretty consistently. It as a much huger problem before.

I also take some herbs which are moistening- lung moistening in particular. I find the nattokwinase helps my lung dryness, I might take one a couple of times a week.

But generally- I feel your pain. My bladders a mess, I deal with cystitis and the frequent urination is quite maddening.

Pretty much a nap will be interfered with about every 20 minutes....with rare exceptions.

I would encourage you to try it. Its worth trying and not too costly if you have to pay yourself , which I do because my insurer will not cover compounded.

Thank you. I feel your pain re the urinary issues.

I will likely give LDN a try if I have no progress with the other stuff i'm trying over the next few weeks.

 

[Mimicry]

I definitely recommend trying it. It can fix so many other symptoms by modulating the immune system so why not the dehydration issue too? I personally haven't yet noticed much effect from it and I've taken it for 9 months, but apparently it can take up to a year for it to work. I have horrible dehydration as well so I really hope LDN does something to it.

 

[SevereME]

I know there a lot of Low Dose Naltrexone threads already but I'm considering giving it a try and just wondered on the off chance anyone might have experienced relief from the M.E./CFS thirst/dehydration type symptoms when using Low Dose Naltrexone? Or even heard of it helping others in this way.

My main symptom is extreme thirst, dehydration, frequent urination. That to me has always felt the worst although I do have the fatigue and various other horrible symptoms.

So yes, a bit of a random question but it seems LDN is a miracle drug for some and I wondered, if it improves M.E. CFS symptoms generally if it might on the off chance improve this issue with ongoing thirst / fluid homeostasis.

I presume you have had diabetes ruled out? I have been thinking of an artificial saliva thing but maybe that won't really help since as you said - and also as I experience it - fluid just seems to almost not get absorbed. And I do take extra magnesium and potassium so it won't be a lack of electrolytes. Obviously clinically it's not considered dehydration but if I drank a normal amount of water instead each day then who knows?

 

[Replenished]

I presume you have had diabetes ruled out? I have been thinking of an artificial saliva thing but maybe that won't really help since as you said - and also as I experience it - fluid just seems to almost not get absorbed. And I do take extra magnesium and potassium so it won't be a lack of electrolytes. Obviously clinically it's not considered dehydration but if I drank a normal amount of water instead each day then who knows?

Yes, diabetes has been ruled out. Those artificial saliva's I find absolutely useless. They last about 5 seconds before you'd need another spray. The only ones that were of any use were the xylie stick on melts, that you stick to the side of your mouth for the night. But even those are the best of a bad bunch and not something I found particularly useful.

 

[gregh286]

Yes, diabetes has been ruled out. Those artificial saliva's I find absolutely useless. They last about 5 seconds before you'd need another spray. The only ones that were of any use were the xylie stick on melts, that you stick to the side of your mouth for the night. But even those are the best of a bad bunch and not something I found particularly useful.

Hi
If i drink only sparklng mineral water it tends to stay away
If i mix fluids...tea...juice and diet coke for eg it makes it flair up
Whats youdfluid intake lke

 

[Rufous McKinney]

Thank you. I feel your pain re the urinary issues.

reading about bladders...I've decided to try applying b-caryophylene topically around my bladder and lower back to see if it might calm all this down. I may try to get DMSO and use that also.

My main symptom is extreme thirst, dehydration, frequent urination. That to me has always felt the worst although I do have the fatigue and various other horrible symptoms.

FROM CHINESE TRADITIONAL:

"The major clinical manifestation of Yin deficiency is dryness. This includes dry mouth, dry skin, dry eyes, and dry hair and nails. Some other clinical manifestations are thirst, especially in the afternoon, night sweats, and the sensation of heat in areas of the chest, palms of hands, and soles of feet."

https://whitneygreenacupuncture.com/diagnosing-patterns-yin-deficiency/


I need to do more of the diet things listed above. You will notice it emphasizes the kinds of foods that Asians often eat. Since its an Asian medical protocol, thousands of years old.

There are probably equivalents for some food categories here that could substitute for some items below.

 

[Judee]

I think there have been a few here who said they became depressed when using LDN. IIRC @godlovesatrier was one of them but you could look for posts from others as well.

Just maybe something to be mindful of when you try it.

 

[godlovesatrier]

Ldn....diziness for two weeks. Did crash me as well slept a lot. All bad news.

I've found a few others who reacted like I did. But they have MCAS and spinal leak issues. But that type could easily be mis diagnosed with ME. @Gingergrrl did you ever try ldn and did you react badly? Ginger was diagnosed with ME but found out she has MCAS.

 

[Gingergrrl]

@Gingergrrl did you ever try ldn and did you react badly? Ginger was diagnosed with ME but found out she has MCAS.

I tried LDN in early 2014 but did not tolerate it even at a very low dose. I was not allergic to it but it caused me to have complete insomnia where I did not even sleep for 5 minutes at night which was intolerable.

It was prescribed for me by a naturopath (back at that time) as an immune modulator. All of my diagnoses (except for Hashimoto's) were still totally unclear at that time so I was trying everything I could think of! I know it helps a lot of people but it did not work for me.

 

[godlovesatrier]

I think I had that too but not 100% sure. The insomnia I mean.

So that's four of us that reacted the same way. Maybe it means something important.

 

[ruben]

Ldn....diziness for two weeks. Did crash me as well slept a lot. All bad news.

I've found a few others who reacted like I did. But they have MCAS and spinal leak issues. But that type could easily be mis diagnosed with ME. @Gingergrrl did you ever try ldn and did you react badly? Ginger was diagnosed with ME but found out she has MCAS.

How is a diagnosis of MCAS done in UK. Can this be done on NHS.

 

[godlovesatrier]

I don't think so no. Maybe privately, but I am not familiar with the private doctor who can do this yet. Even private doctors have waiting lists into the months and years due to the issues with NHS funding.

You're best bet is to get the tests outlined on mastattacks website: https://www.mastattack.org/diagnosis/