• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

I feel very dehydrated, no matter how much I drink

Ocean

Senior Member
Messages
1,178
Location
U.S.
The basic rule of thumb is: if you're losing water, you need salt (sodium). If you're retaining water, you need potassium.

Very interesting. I was going to start a thread here asking about retaining water. I've been retaining water since I got sick. It's related to my PMS bloating but is much more extreme than before I was sick and extends to more than just my belly, but also my face, legs, etc. I did not have this problem before CFS or during CFS remissions. Is it safe to take potassium supplements?
 

adreno

PR activist
Messages
4,841
Very interesting. I was going to start a thread here asking about retaining water. I've been retaining water since I got sick. It's related to my PMS bloating but is much more extreme than before I was sick and extends to more than just my belly, but also my face, legs, etc. I did not have this problem before CFS or during CFS remissions. Is it safe to take potassium supplements?
It is safe to take potassium in reasonable amounts. I mix 1/4 teaspoon potassium citrate per liiter of water, along with 1/2 teaspoon sea salt. I find I need sodium also. That's a 2:1 sodium: potassium ratio. You might need a 1:1 or even 1:2 ratio, you'll have to experiment a bit to find out.
 

adreno

PR activist
Messages
4,841
Thanks Adreno,

What are symptoms of low sodium? Not sure about my hormone levels (which hormones?) - I don't think I have ever been tested and what tests are relevant. I did a 24 hour urine test once but that was many years back before the excessive thirst/urination problem got bad. My GP is absolutely clueless and actually doesn't believe how ill I am anyway. Routine bloodwork for electrolytes always come back within normal ranges.

Love Esperanza x
Your electrolyte levels are dependent on cortisol, aldosterone, vasopressin, oxyticin, estrogen and probably others. I don't think you can gain much information from homone tests, unless there is an obvious problem found (like diabetes insipidus).

The most obvious symptom of low sodium is losing water (peeing all the time), but also headache, dizziness, weakness, and many others. You can find the information on the Internet, it's no mystery.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
There is another issue here. I am always thirsty but rarely dehydrated. My throat is always dry and sometimes painful. I find the best solution is to slowly sip soda water. It only takes a swig every now and again. This will not help if there is genuine dehydration though. For some reason the soda water makes my throat normal for a while. I actually knew someone with Chiari Syndrome who also benefited from doing this.​
A second issue is that I think many of us have constant all over sweating. We lose water through our skin. This is an acetylcholine thing I think. I am really only guessing about this, but other explanations do not make sense for me for when I do get dehydrated.​
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
It is safe to take potassium in reasonable amounts. I mix 1/4 teaspoon potassium citrate per liiter of water, along with 1/2 teaspoon sea salt. I find I need sodium also. That's a 2:1 sodium: potassium ratio. You might need a 1:1 or even 1:2 ratio, you'll have to experiment a bit to find out.
Thank you, I may try this. I'd love to have my water retention go away. Will update if I try it.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
I tend to be sensitive to sodium. Partially because I have high blood pressure (I am on Lisinopril which actually lowers sodium in my body), but also because I think it sometimes increases pain in certain areas of my body. I get some sodium with my foods, but do I still need at least some sodium in my electrolyte mix? Also, is too much chloride a bad thing?
 

adreno

PR activist
Messages
4,841
I tend to be sensitive to sodium. Partially because I have high blood pressure (I am on Lisinopril which actually lowers sodium in my body), but also because I think it sometimes increases pain in certain areas of my body. I get some sodium with my foods, but do I still need at least some sodium in my electrolyte mix? Also, is too much chloride a bad thing?
You might not need the sodium. You could try adding a little potassium first. If you find you have to go to the bathroom too often, add in sodium (but keep it at a 1:1 ratio with potassium). You have to be careful with sodium if your blood pressure is high. Chloride is harsh on the GI tract, so take it with food. It is acidic, citrate is alkaline.
 

Wifi123

Senior Member
Messages
159
For a long time I suffered with dry mouth and particularly at nighttime and I still suffer extremely. I also suffered from burning, tingling sensations in the mouth, a metallic taste as if I had battery acid in my mouth, lips and tongue feels swollen, feel as though my mouth is infected, and the tongue just tingles all the time.

Any medical treatment was in vain.

My mouth in fact felt as though it was acting like a battery. It felt as though I was experiencing the voltaic affect, and I went to a dental site, and discovered that amalgam fillings in my teeth were causing a galavanic affect, that is, it was producing a current through electrosis of the silver and mercury of the fillings with my saliva, and the electro magnetic fields and radiation around me was the electro motive force to produce this affect.

I had the amalgam fillings removed and the extreme suffering reduced considerably, but, unknowingly to the dentist, who should have been switched on, he replaced the amalgam fillings with metal-based ceramics, so I still suffer extreme dryness of the mouth and tongue, and I drink oodles of water to try to quench the dryness, because the metal in the fillings is a conductive material.

The medical fraternity refer to it as burning mouth syndrome, and the modern wireless technology is one of the main causation factor of this frustrating syndrome.
 
Messages
16
I am on methyl supps and this is happening to me . I am drinking absurd amounts of water and nothing quenches me and I wouldn't even say I'm excessively urinating by any means. I should be for the amount of liquid I am putting in. My constipation is also worse than usual and I am so hungry only because I think the mechanism of you're full or you're hydrated is turned off (or i am just eating because i am so thirsty) Could this be a potassium issue ? The last time I remember this happening was when I was on some methyl supps and this just happened in the past few days. I bought some potassium today and am trying it. Prior to this I had been salting everything and drinking water with sea salt due to low bp and craving it. Could this have thrown things off ? I seem to really not want salt right now. I had electrolytes run last week and they were perfectly normal (except high albumin) so I have no desire to pay to run them again if I have any more blood tests I will have no blood left in me and this passed once before so I assume it will again but it's so annoying! I tried electrolyte mix didnt seem to do much. If it is potassium -how long until I know it's working?
 

Gondwanaland

Senior Member
Messages
5,092
I have had this feeling of dehydration as well. Years ago I read in one of the earliest cfs books that chronic thirst can be treated by taking one of the omega 6 essential fats, GLA. (gamma linolenic acid) GLA is found in borage oil, evening primrose oil, and black currant oil. I have tried all three and they have helped me at times. I have read that it takes 6-8 weeks to work, but it has helped me more quickly than that.

hope you find some answers,

JAH

p.s. I had a dream where I watered plants, and all the water went into the trays underneath, but the soil was still dry. I feel like that often...
I just did a search for "Borage" in the whole forum and this is the ONLY ONE mention of it in the whole board???
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I just did a search for "Borage" in the whole forum and this is the ONLY ONE mention of it in the whole board???
You want cold pressed evening primrose oil, not borage oil.

Unrefined borage oil contains traces of naturally occurring toxins called pyrrolizidine alkaloids (PAs). These compounds have been shown to be both hepatotoxic and carcinogenic and are present within the seeds and leaves of the plant to deter animals from consuming them. Refining borage oil is therefore a requirement to ensure these compounds are at levels safe for human consumption; however, whilst the refining process is a necessity, it also strips the oil of a number of beneficial compounds, including vitamin E, carotene, phytosterols, sterols, lecithin, polyphenolic antioxidants, as well as others.
 

Gondwanaland

Senior Member
Messages
5,092
You want cold pressed evening primrose oil, not borage oil.
Unfortunately EPO had only detrimental effects in my body. Borage had some good effects, but since I took it along with Flaxseed oil, the detrimental effects got confounded. Flaxseed oil is definetly a poison to my body though.

Unrefined borage oil contains traces of naturally occurring toxins called pyrrolizidine alkaloids (PAs). These compounds have been shown to be both hepatotoxic and carcinogenic and are present within the seeds and leaves of the plant to deter animals from consuming them. Refining borage oil is therefore a requirement to ensure these compounds are at levels safe for human consumption; however, whilst the refining process is a necessity, it also strips the oil of a number of beneficial compounds, including vitamin E, carotene, phytosterols, sterols, lecithin, polyphenolic antioxidants, as well as others.
I know @Lolinda found some studies stating this wasn't really a problem... Could you please post them here, @Lolinda ?
 

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
I know @Lolinda found some studies stating this wasn't really a problem... Could you please post them here, @Lolinda ?
welcome :)

https://www.ncbi.nlm.nih.gov/pubmed/24130010
the abstract already makes a hint:
"if studies based on gas chromatography and TLC methods showed that PAs are not co-extracted with oil"

and in the text of the paper one learns that they could not detect anything at a detection level of 200 parts per trillion:
"The above described results, though obtained on different
alkaloids of the pyrrolizidine family, reasonably suggest that
amabiline, lycopsamine, intermidine and the acetyl derivatives
of lycopsamine and intermidine, if present in the Borago
officinalis oil under investigation, are at level lower than 200
ppt. This rapid, non-chromatographic approach turned out to
be valuable for quality control of borage oil preparation. An ex-
traction/enrichment step in the preparation of oil samples was
demonstrated to be necessary to reach low LODs at the ppt level."

however, there can be different extraction methods (cold/heat/chemicals...) yielding different pyrrolizidine results. here, at the right bottom of this textbook screenshot, they write that cold-pressed is safe:
tmp_23246-pyrrolizidine-851474397.jpeg
 
Last edited:

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
My doctors, who are up on the latest research, ave always steered patients away from borage oil to EPO.

In any case, our bodies, particularly outmr cell and mitochondrial membranes, need ALL the lengths of chains in fats. It is counterproductive to focus on one or two.
 

Gondwanaland

Senior Member
Messages
5,092
In any case, our bodies, particularly outmr cell and mitochondrial membranes, need ALL the lengths of chains in fats. It is counterproductive to focus on one or two.
There are supplements of Borage+Flax+Omega3 in a single capsule. I tried all of 3 separately and my body is rejecting Flax and Omega 3 :confused:
 

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
My doctors, who are up on the latest research, ave always steered patients away from borage oil to EPO.
Much appreciated! Would there be a possibility to ask the doctors for this latest research? And as a second question, if borage toxicity would occur, which labs ould change? This would be great help for all of us! Also, I invite you to take a look to my previous post to which you responded by these lines. Due to a bug in PR, I could complete it only now. There is an important addition that oils are different and cold pressed is deemed safe. However, actually, I heard the opinion that only the leaves of the plant contain any problematic amounts of pyrrolizidine and the seeds contain almost none, so the whole thing is fearmongering...
There are so many factors influencing the answer: seed contents, extraction methods, refining, ... It would be wonderful if your scientifically uptodate doctors would have references.
I would try this myself with my doctors, but unfortunately they are entirely useless... yes, they have already heard of borage... :eek: :) :( :(
I understand that borage is not part of medical studies...

PS: at least for me, the question is very important: I cannot take more omega-6 oils due to side effects. If I take EPO, I get a lot of stuff with little GLA. The only option I have is to increase the ratio of GLA, that is, take borage. Here I had no side effects that I could feel. Over time, I was able to slowly increase my deficient GLA and DGLA levels (measured in RBC). I can show labs if it should be of interest.
 
Last edited:

Gondwanaland

Senior Member
Messages
5,092
Interesting document, @Lolinda

I think it is all a balance of pros and cons. Perhaps the body will handle the PA if the need for GLA is high. For some people it might not be worthwhile. Additionally the right diet could neutralize toxic build up (?)

Here is about Flax from the same book:
Pflanzen.jpg



I have intolerance to lignans because I have high FSH, and my body wants to produce estrogen, but lacks raw material (GLA and DGLA?). If I take lignans, they block my endogenous production and there is a chaos inside me. I suppose I am also sensitive to the cyanogenic glycosides which block thyroid hormones. Flaxseed oil caused me cognitive impairment and some loss of fine motor skills.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Much appreciated! Would there be a possibility to ask the doctors for this latest research? And as a second question, if borage toxicity would occur, which labs ould change? This would be great help for all of us!
I have enough other things to discuss with my current doctor that paying for his time to dig up research studies take away from what I need. However, over time, I have found he's right when I've searched for research studies or I have asked him for research.
Also, I invite you to take a look to my previous post to which you responded by these lines. Due to a bug in PR, I could complete it only now. There is an important addition that oils are different and cold pressed is deemed safe. However, actually, I heard the opinion that only the leaves of the plant contain any problematic amounts of pyrrolizidine and the seeds contain almost none, so the whole thing is fearmongering...


There are so many factors influencing the answer: seed contents, extraction methods, refining, ... It would be wonderful if your scientifically uptodate doctors would have references.
I would try this myself with my doctors, but unfortunately they are entirely useless... yes, they have already heard of borage... :eek: :) :( :(
I understand that borage is not part of medical studies...
This gives you an idea of where my current and former doctors are getting their information.

https://bastyr.edu/news/general-new...nus-uncovers-ancient-medicine-along-silk-road

Both are Bastyr-trained and use information from the Bastyr Research institute and many other sources. I trust their knowledge and see no reason to pay for their time to ask for research studies when I've found them to consistently have high quality knowledge.
PS: at least for me, the question is very important: I cannot take more omega-6 oils due to side effects. If I take EPO, I get a lot of stuff with little GLA. The only option I have is to increase the ratio of GLA, that is, take borage. Here I had no side effects that I could feel. Over time, I was able to slowly increase my deficient GLA and DGLA levels (measured in RBC). I can show labs if it should be of interest.
B3, B5, B6, biotin, and vitamin C are needed to convert GLA to DGLA..if you are short of any of these, you wouldn't be able to properly convert.
 

Gondwanaland

Senior Member
Messages
5,092
In my understanding, getting the B3 is the most problematic issue, which is enabled by the anti-glycation supplementation.