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    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.

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Messages
3
Hi Everyone,

I've been reading this forum off and on for years. There are so many knowledgable and helpful people here.

My introduction post was just approved (from May), but I have other issues, and am hoping someone can help me with them, or point me in the right direction.

A couple months ago, I had many blood tests done, and a HTMA. I have so many issues going on. Many deficiencies - including the big ones B1 and B12 - and toxicities - including mercury toxicity, candida, h pylori, e coli, strep and staph in my gut, etc. I have POTS, Dysautonomia, Chronic Fatigue, Hashimoto's, migraines, etc. I have a diseased gallbladder (with a lot of pain in my gallbladder/liver), chronic dehydration, blood sugar regulation issues, low blood pressure, ataxia, bile reflux, chronic diarrhea, etc. I'm not making digestive enzymes or many neurotransmitters. I can't tolerate most foods. I crave butter and carbs. The HTMA showed my main electrolyte minerals within range, except for sodium, which was high. I have a feeling I have severe deficiencies in all though. I can't tolerate any salt. Just a little bit causes a bad headache, increased memory loss, decreased awareness, and a bulgy eyes feeling. Just a tiny bit of magnesium causes extreme fatigue and weakness, feeling like I'm going to pass out and not wake up, lower blood pressure, etc. Potassium does the same thing, but not as bad. Most of the time I feel my eyes bulging out with pressure, and can't take in information around me. I almost feel blind because of this. I can't remember my relationship with my family, so I become irritated with them a lot. I'm usually very kind, sensitive, empathetic and peaceful (high Copper personality?!).

A previous doctor, from many months ago, prescribed me Cholestyramine from a compounding pharmacy. I tried just a tiny bit a few different times, and it made me become aware! It was temporary, of course, like everything. My current doctor doesn't want me to take it, because it's a pharmaceutical, and is trying to get to the root cause of my issues.

The left side of my head and face always hurt, but mainly at night. The right side of my face, head and body are completely numb, and feel far away. When I take Magnesium, Zinc, Phosphorus, or anything else that thins the blood or causes Vasodilation, I experience a severe migraine in the evening, on the left side of my head. There will be a lot of pain and pressure behind my left eye, I will have strong visual disturbance, with blurry vision and seeing black. Then I will feel very weak, with lowered blood pressure. When I increased the Zinc, just a little, the other day, it caused a migraine as painful as childbirth! The skin on my entire body is numb most of the time. When I'm aware of what's going on around me, it's not numb.

I'm 41. Looking back at photos from my childhood, I noticed that the right side of my mouth has always been a bit droopy, along with my right eye. My dad recently said that I've always had that. Thinking back to when I was about 9, that's when my anxiety/OCD started. I also noticed my lower back being more concave, with my butt protruding. I recently learned that this is swayback. I also learned that that's probably from Copper deficiency. When I cover up my left eye, my right eye is blurry, but I feel I can process more information that I see. When I cover my left eye, it's not as blurry, and I can't process much of what I see.

Sometimes when I sleep at night, it feels like my mind is awake, but my body is asleep, or the other way around. It's hard to explain. But they aren't connecting.

My current naturopathic doctor/chiropractor says I have Copper toxicity (from low Zinc) and Copper deficiency, according to my HTMA. He has me taking Zinc, B Vitamins, Magnesium, Selenium, TUDCA, Carboxy, Para 1, Homeopathic Lymph Detox, Berberine, and Cell Salts. He had me taking Advanced TRS, but I recently stopped this, after reading the horrible stories of it making people a lot worse. I'm also doing daily coffee enemas. He doesn't listen to a lot of my concerns, and becomes defensive when I tell him I can't tolerate something. He says I definitely should not take any Copper, mainly because my Sodium was high in my HTMA. And that I have Copper toxicity.

I've been taking a little bit of the MitoSynergy Copper throughout the day. It helps the migraines, when I have them, and sometimes helps me sleep. It also helps me become aware, depending on the day, and how I'm doing overall! But it's still always temporary. It is my understanding that Copper raises Sodium and reduces Potassium. Zinc lowers Sodium and raises Potassium. Sodium is a Vasoconstrictor, which helps migraines. Magnesium, Potassium and Zinc are Vasodilators. I read that Copper makes it so you can tolerate Magnesium (which makes sense since Copper raises Sodium and Magnesium lowers it). I initially feel good with the calming minerals, but it's like I have two sides to what's going on - especially when it comes to my awareness. I know that Norepinephrine is a Vasoconstrictor. And I'm not making many Neurotransmitters. My Ferritin is low. Iron supplements make me feel good, initially, then cause the weakness, dissociation, migraine, and a salty taste in my mouth.

I have many memory and awareness issues. I am currently experiencing major stress in my life, along with PTSD, and had a rough childhood. When I do become aware of what's going on, I cry, then experience a bad headache and decreased awareness again. I can't tolerate any stress, whatsoever. My AM cortisol blood test is on the lower end of normal when it was checked a few months ago. It is my understanding that with low cortisol and adrenal issues, you need a lot of salt. But I can't tolerate salt! I also read that Magnesium supplementation makes adrenal issues worse. I need Magnesium and Potassium in order for the B Vitamins to work. So I'm lost.

I have green eyes. They're supposed to be blue, but I have a lot of sulfur and toxicity built up in my body. A couple months ago I noticed a brown ring around my pupil. I know the Kayser–Fleischer ring, for copper toxicity, is supposed to be around the Iris. Does the brown ring around my pupil have anything to do with Copper?

When I wake up in the morning, I usually feel calm and more like myself. Then sometime between 10am-12pm, I become more irritable and less aware, then numb. Then everything is much, much worse at night. Starting at about 3/4pm every day, I start becoming hyper alert (but much less aware), with increased energy (unless I take Magnesium), and a very itchy scalp, before it goes numb. I become very hungry at night, and can't get enough to eat. A lot of the time I experience this during the day, but it's worse at night. I have pretty bad insomnia. My brain stem, spine, and tailbone hurt much of the time. Many of my severe memory, consciousness, and vision issues started about three years ago when I took Zinc and Glutathione (both recommended by a different naturopathic doctor). I also had severe shaking, like convulsions, back then, several different times at night. I still experience this throughout the day and evening, but it's very subtle. When I took a tiny pin head sized amount of Betaine HCl a few months ago, I experienced the violent shivers. But it only lasted about 10 seconds. Some of the time, I feel completely stuck in my head and unresponsive to my family around me (like Autism), which started about three years ago too. That's probably from the Mercury toxicity and mineral deficiencies.

What does this sound like? Adrenal Insufficiency? Severe Copper deficiency, among other problems? Why can't I tolerate Salt or Magnesium? It kind of sounds like a dysregulation with my Sympathetic/Parasympathetic nervous system. How do I balance them? I know how important B1 is for all of this! But I can't tolerate the electrolyte/mineral co-factors.

Certain stress responses, like with the Magnesium, it causes me to take about ten steps back in my healing. I was doing really well with my awareness and memories, until I added in just a little bit of Magnesium a few days ago. It was actually a few grains of Epsom Salts. It really helped me remember myself, initially! But also caused severe pain and pressure in my brain stem area, and then caused the migraines, dissociation, weakness, etc. The same thing happened when I went to the beach last year, and the salt in the air from the ocean caused the same type of stress response.

I know this is a lot! I'm desperate for help. I appreciate any input.
 

linusbert

Senior Member
Messages
1,059
this is a lot of complexity.
my recommendation is to start with vitamin D.
for electrolytes its the other side of the coin which is missing when you get bad effects from one. it doesnt always have to be some complex mechanism, it can just be that taking magnesium aggravates a calcium deficiency. but taking calcium might fuck you up as well. it did for me. still does.
so start with vitamin D to bring in calcium, it also restores balance in electrolytes, not only calcium but also magnesium , phosphor and co.
and with D always the K2mk4.
(when i had D deficiency, my phosphor tanks , means big deficiency, also magnesium goes low... and calcium weirdly is high)

in general, calcium is the antagonist for magnesium. so take calcium or combine find a good ratio.
sodium is kinda for potassium, if sodium hurts you might need more potassium.

also b vitamines do regulate levels of electrolytes in blood, but i do not know what effects what.
thiamin does make cells retain potassium. so there is that.
i think b6 does with magnesium.

heres some lecture which might help:
https://quizlet.com/6340036/vitamins-and-minerals-agonistantagonist-flash-cards/
 
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Judee

Psalm 46:1-3
Messages
4,395
Location
Great Lakes
I would also look at the forms of minerals you're taking too and see if they are sulfur and/or sulfur thiols. I had some celtic salt in the house but wasn't using it.

A non-ME friend sent me a video from a doctor recommending we take a tiny pinch all through the day so I started that because I know I become hyponatremic pretty often so thought that would be okay.

Well that form of salt has a tiny bit of mag sulfate and since I'm sensitive to sulfur/thiols it didn't take long before I started getting "swollen brain" headaches. :(

I have improved enough that I can take a bath in the salts (even epsom salts now) but not ingest them. (I didn't even used to be able to do that.)

For some reason, some of us with ME/CFS don't do well with sulfur/thiols. I also don't do well on the glycinate forms of minerals. Citrate seems okay. (But find what works for you.)

Also if I can't take the nutrient, I try to find it in a food I tolerate.

It sounds like your one doctor prefers natural things and I do too but if the Cholestyramine was helping you...???

You really have to go by what your body is telling you because it's not "one size fits all" as much we (and doctors) might like. It would be wonderful if we could all take what so-and-so took to go into remission and get well but unfortunately, it doesn't seem to work that way. I wish it did.
 
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brenda

Senior Member
Messages
2,262
Location
UK
Hi @willowhope

Which lab did your HTMA? Apparently there are only 2 who do it properly by not washing the samples. I also have the copper problem and trying to sort that out. I was having vertigo which was pretty scary as I am old and scared in case I fall, being alone most of the time.

I read that vit c antagonizes copper, so took some camu camu and it went straight away! Oh boy was I pleased.

I also have many food intolerances and especially since I moved house just over a year ago, my health has crashed badly and I have been desperately trying to sort it out. I was having interstitial cystitis till I quit all grains and dairy. Have been able to add goat cheese in though.

I am using Dr Lawrence Wilson's book on Nutritional Balancing and his web site, and also seeking the advice of a nutritionist at the company that did my test in the UK as the way forward.

I have also been severely poisoned with mercury and interested in your progress. I am seeing a biological dentist next week to get my last amalgams out.
 

brenda

Senior Member
Messages
2,262
Location
UK
@willowhope me again. I have had more time to study your post and comment more on it. Maybe you are suffering from an overload of supplements. Did you try coming off them all.

There are some very clever people on the Ray Peat forums who might be able suggest a few things as some of them are very good at biochemistry and some have come back from very very serious illness. I think Peat was a genius but got some things wrong but some of his stuff is useful like avoiding all PUFA's.

There was someone posting there called gboldeuv who is not there now. He said that Peat's work only applied to fast oxidizers and that he only understood one of 12 categories. His posts are really worth reading. He used Dr Eck's work a lot. and thought Dr Wilson a bit crazy. He brought himself back from severe illness with cancer.

I have quite a few of the conditions you mention eg Hashi's and diseased gall bladder but have HBP. Many intolerances and MCS. I also have a Lyme diagnosis. I do hope you find some help.
 

lenora

Senior Member
Messages
4,857
Yes, I would say that your supplements range all over. Like MD's not all Naturopathic Doctors are especially proficient at what they do. I'm starting with a new neurologist and no, our personalities don't mesh. However, I know that the more I see her and she learns to know me, things will improve. Like it or not, I simply have to do it.

I, myself, have benefitted from meds and vitamins, etc. Others have been detrimental. Mind you, I've been ill for 45 years or more and have other illnesses that are serious.

Insomnia is my constant companion and has been for over 40 years. I have tried everything natural, my old neurologist was generous with sleep medications (to try....sample size) and we both decided in the end, that my body was better off left alone and I sleep when it's possible. I always try to make that at night, but sometimes I'll fall asleep whereas a few minutes earlier I was sitting in a chair talking. Bizarre, that's all. For me, Sleep Clinics have not proven useful.

I would back off all vitamins and supplements and introduce one at a time. See how that goes. It takes a long, long time to figure everything out. Good luck & better health. Yours, Lenora
 
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