Deadlocked

[outdamnspot]

I was reading the late @Jasper80 's posts and he described an increasing loss of options and kind of 'deadlocked' situation between MCAS, adrenal issues, gut failure etc.

I kind of feel like I'm at the point where the disease has just taken on its own momentum and there's nothing I can do to stop it anymore. Everything I've done over the past 2 years -- throwing herbs, probiotics etc. -- at the situation just temporarily seems to dam the inflammation enough to keep me alive day-to-day, but even that barely works anymore. My body has just been running on adrenaline for so long, and now it feels like there isn't anything sustaining it anymore. I'm not severe to the point where I'm completely disabled -- I'm stuck in the house, but can use my phone (no more TV etc.) and shower/cook for myself. But I have increasingly terrifying episodes of feeling 'empty' (slow pulse, barely breathing properly, mentally empty/blank), and using herbs etc. are increasingly making these reactions worse; it's like a parasympathetic state is somehow very bad for me, but my body can barely produce the adrenaline it needs either.

My body seems to have no sense of rhythm anymore; I don't get naturally tired or desire sleep. I'm just arbitrary awake and then maybe am lucky to get a few hours of nightmare-fueled sleep.

All my test results are normal. And it seems there's nothing I can do to change anything .. having been left completely to self-management. So I give up .

 

[Lisa108]

All my test results are normal.

Which tests did you take? What about cortisol levels? Antibodies? Cytokines?

So I give up

Please don't!
I hope more knowledgeable members will answer your thread and come up with some ideas.
Wishing you all the best!

 

[pamojja]

Everything I've done over the past 2 years -- throwing herbs, probiotics etc. -- at the situation just temporarily seems to dam the inflammation enough to keep me alive day-to-day, but even that barely works anymore. My body has just been running on adrenaline for so long, and now it feels like there isn't anything sustaining it anymore.

Have you ever tried high-dose vitamins? I'm asking because I used it for an other serious condition, and thereby I observed it gradually improved adrenal and other androgenic hormones. A very slow process though.

For example, highest levels of any body-tissues in the body for vitamin C is found for the adrenals. Also all B-vitamins, especially vitamin B5 and B12 are needed. Other nutrients which come to mind are vitamin E, CoQ10, Magnesium, Zinc, l-carnitine, omega-3 fatty acids, tyrosine, lecithin, creatine and l-theanine.

 

[Shoshana]

Terrifying nightmares are so debilitating. And lack of rhythm.... thinking of you, and hoping you can find some small things that you can still enjoy, even just sometimes..... and hang on to those.

 

[outdamnspot]

Which tests did you take? What about cortisol levels? Antibodies? Cytokines?

I have two GP's I've seen. One is a family doctor who has known me for years but refuses to believe anything is wrong with me. I see him to get occasional scripts, but he doesn't acknowledge I have CFS. He's done basic blood testing (vitamin levels etc.), and also did an AI screening (ANA etc) but that was it.

Another doctor was organized by my social worker. She only works mornings and is difficult to get to. She's a lot kinder and believes I'm sick. However, when I asked for a referral to a rheumatologist or immunologist she said no, it wasn't necessary. She checked me for Celiac, iron levels etc and also did a fecal calprotectin test. So my testing probably hasn't been profoundly in-depth but I also have two not particularly competent doctors, and don't have the energy/finances etc to find someone new. At the moment, I can manage to get to one appointment a month if I'm lucky. It's too difficult when the burden falls entirely on me.

 

[outdamnspot]

Have you ever tried high-dose vitamins? I'm asking because I used it for an other serious condition, and thereby I observed it gradually improved adrenal and other androgenic hormones. A very slow process though.

For example, highest levels of any body-tissues in the body for vitamin C is found for the adrenals. Also all B-vitamins, especially vitamin B5 and B12 are needed. Other nutrients which come to mind are vitamin E, CoQ10, Magnesium, Zinc, l-carnitine, omega-3 fatty acids, tyrosine, lecithin, creatine and l-theanine.

Most vitamins make me crash now. I couldn't tolerate creatin, l-theanine, magnesium or a b-complex.

Vitamin C probably saved my life in the past. I've used time-release before bed for over a year and it's the only thing that can calm adrenaline/inflammation and let me sleep. I still take it. However, while it used to give me massive improvements in energy and adrenal fatigue the next day, it doesn't at all anymore. Gondawanaland said it may be an issue with salicylates.

 

[pamojja]

Gondawanaland said it may be an issue with salicylates.

I doubt you would have this issue with pure ascorbic acid, which is just C6H8O6, and which I used at about 24 g/d to achieve highest possible and therapeutic serum levels for the last 10 years. Which also circumvents any problems with fillers and binder - often not as non-toxic as vitamin C - at such high amounts. I also highly doubt just one pill of vitamin C would have done anything in my case.

 

[ljimbo423]

Most vitamins make me crash now. I couldn't tolerate creatin, l-theanine, magnesium or a b-complex.

Vitamin C probably saved my life in the past. I've used time-release before bed for over a year and it's the only thing that can calm adrenaline/inflammation and let me sleep. I still take it. However, while it used to give me massive improvements in energy and adrenal fatigue the next day, it doesn't at all anymore. Gondawanaland said it may be an issue with salicylates.

I have found that treating mitochondrial dysfunction has completely stopped my flu-like flares for over a month now and has greatly reduced my PEM.

I understand that you don't tolerate things well but if you could take just tiny doses and work your way up very slowly, I think they would help a lot.

It took me about 3 months to go up 200mg of alpha lipoic acid (ALA) because I could only tolerate 10-15mg at a time. Things that are really good for the mitochondria are coq10, BCAA's, B-1 and acetyl-carnitine.

I also couldn't tolerate more than 10-15mg coq10 at a time. Over the course of a few months though, I worked my way up from 100mg to 600mg.

Hang in there!! I've been disabled with CFS for 29 years. I haven't felt as good as I do now for probably 15 years. So there's always hope if you don't give up!

 

[S-VV]

I would recommend a hair tissue mineral analysis. It's an easy way to assess any bottleneck deficiency that is hindering enzyme synthesis.

For example, the enzyme for transforming dopamine into adrenaline is copper-dependant, and vitamin C powerfully chelates copper.

HTMA can also tell us a lot about thyroid and adrenal activity, and can orient a recovery plan.

 

[S-VV]

Until you get the HTMA I would hold off any megadose treatments (as much as I love them), because there is a real risk that you are aggravating execess or deficiencies.

 

[pamojja]

and vitamin C powerfully chelates copper.

Not my experience. Beside serum and whole blood also did yearly HTMAs. Had a problem with too low Zinc and started to increase it up to 60 mg/d. That's where headaches started, but found just 1 mg/d would alleviate. Not long and copper shoot above normal and zinc below, so ceased the copper again. Years later zinc is still at the low end of normal, copper in the mean (which means a completely off cu:zn ratio) just as it was in the beginning 10 years ago. Though now I do tolerate 70 mg/d of zinc just fine (without taking any copper).

Therefore, 10 years of having 24 g/d of ascorbic acid didn't chelate copper even a bid.

However, I do recommend regular testing, not only HTMAs, but also serum and whole blood or RBC (not available to me), since all these testing methods to have their shortcomings with some of the minerals.

The only vitamin which really aggravated a deficiency was vitamin D in my case, by utilizing Magnesium at higher speed it pushed a subclinical Mg-deficiency into very severe.

 

[S-VV]

Not my experience. Beside serum and whole blood also did yearly HTMAs. Had a problem with too low Zinc and started to increase it up to 60 mg/d. That's where headaches started, but found just 1 mg/d would alleviate. Not long and copper shoot above normal and zinc below, so ceased the copper again. Years later zinc is still at the low end of normal, copper in the mean (which means a completely off cu:zn ratio) just as it was in the beginning 10 years ago. Though now I do tolerate 70 mg/d of zinc just fine (without taking any copper).

Therefore, 10 years of having 24 g/d of ascorbic acid didn't chelate copper even a bid.

However, I do recommend regular testing, not only HTMAs, but also serum and whole blood or RBC (not available to me), since all these testing methods to have their shortcomings with some of the minerals.

The only vitamin which really aggravated a deficiency was vitamin D in my case, by utilizing Magnesium at higher speed it pushed a subclinical Mg-deficiency into very severe.

Yeah, Vitamin D on its own can cause a deficiency of Mg and Vit.A. It also does funny stuff w/ Ca and Vit.K.

About copper, there seem to be conflicting reports. Dr Wilson states that Vit C chelates Cu.

Other studies suggest that while Vit C decreases Cu absorption in the gut it increases translocation of Cu from ceruloplasmin to the cell, amplifying the normal process up to X10.

If you have normal ceruloplasmin this can be very bad and cause high intracelular copper (maybe this was your case), while if you have low ceruloplasmin (and high unbound serum copper by extension) it could help free ceruloplasmin to catch that free copper and effectively "chelate" it. Ofc this is pure speculation. Copper seems to be the most problematic essential mineral of them all.

 

[pamojja]

Yeah, Vitamin D on its own can cause a deficiency of Mg and Vit.A. It also does funny stuff w/ Ca and Vit.K.

It just doesn't cause deficiency out of a defect. It utilizes all these co-factors for the functioning of all bodily systems. And thereby can exacerbate imbalances. If the supplementer isn't aware of levels and needs in co-factors. Which can be highly individual and needs to be experimented and measured.

If you have normal ceruloplasmin this can be very bad and cause high intracellular copper (maybe this was your case),

My averages over the last 10 years:

htma copper: 10 ug/g (normal range 9 - 39)
serum copper: 128 µg/dl (normal range 65-165)
whole blood copper: 1.3 mg/L (1.1-1.2)
ceruloplasmin: 27 mg/dl (15-30)
unbound copper: 32% (5-20)

htma zinc: 159 ug/g (100-210)
serum zinc: 73 µg/dl (73-127)
whole blood zinc: 7.5 mg/L (7.3-7.7)

serum copper:zinc ratio: 1.9 (≤1.3)
whole blood cu:zn ratio: 0.18 (0.135-0.165)

(Note: Usually serum contains 10%, and red blood cells 90% of the zinc in blood. While 60% of copper in blood is contained in serum.)

One can see from the outset HTMA is the least obvious, and copper in whole blood (including indeed red blood cells content) along with unbound the highest... Only that its acute imbalance wasn't caused by vitamin C, but temporary higher copper intake to ease the headaches from zinc.


But let's not go off too much with speculations - that vitamin C would chelate copper - not reflected in experience,.

 

[S-VV]

It just doesn't cause deficiency out of a defect. It utilizes all these co-factors for the functioning of all bodily systems. And thereby can exacerbate imbalances. If the supplementer isn't aware of levels and needs in co-factors. Which can be highly individual and needs to be experimented and measured.



My averages over the last 10 years:

htma copper: 10 ug/g (normal range 9 - 39)
serum copper: 128 µg/dl (normal range 65-165)
whole blood copper: 1.3 mg/L (1.1-1.2)
ceruloplasmin: 27 mg/dl (15-30)
unbound copper: 32% (5-20)

htma zinc: 159 ug/g (100-210)
serum zinc: 73 µg/dl (73-127)
whole blood zinc: 7.5 mg/L (7.3-7.7)

serum copper:zinc ratio: 1.9 (≤1.3)
whole blood cu:zn ratio: 0.18 (0.135-0.165)

(Note: Usually serum contains 10%, and red blood cells 90% of the zinc in blood. While 60% of copper in blood is contained in serum.)

One can see from the outset HTMA is the least obvious, and copper in whole blood (including indeed red blood cells content) along with unbound the highest... Only that its acute imbalance wasn't caused by vitamin C, but temporary higher copper intake to ease the headaches from zinc.


But let's not go off too much with speculations - that vitamin C would chelate copper - not reflected in experience,.

Very intetesting. It seems that HTMA values are opposites of serum values. And with your ceruloplasmin being in the high range, copper would have no problem accessing peripheral tissue like hair. But its borderline low.

What do you make of this? I tend to place more validity on HTMA, as reflecting tissue levels.

Which values do you take as indicative of true Cu:Zn status?

 

[pamojja]

What do you make of this? I tend to place more validity on HTMA, as reflecting tissue levels.

Which values do you take as indicative of true Cu:Zn status?

I try to consider each on their own terms, along with dietary and supplemental intake, symptoms, and then again all together. For example some interpretations of cu and zn in hair:

Cu ↑ may be ext, ↓ often w. dangerous ↑ in liver; Zn ↑ nearly always mean depl. in body; Cu:Zn < or >8 = reproductive hormone imbalance

And those HTMA values rather confirm whats found also in my other labs, also hormones. These are all very dynamic systems, and hair in my eye often is closer to excretion like urine, than other bodily tissues. Low excretion can also be caused because other tissues are clinging to a mineral. And high excretion by actual bodily loss. Also cu clearly peaked and zn plumed immediately after the addition of supplemental cu (only serum, had no whole blood of that time).

 

[percyval577]

And it seems there's nothing ...

That´s it - doing something not to the body! Systematically not, did you try it?

No, probably you didn´t, and it´s not all easy of course. It´s even difficult in other respects, acting by not doing (Laotse), unhidding (greece), it might also the proper meaning of nirwana, in Japan one may think on aikido.

Anyway, what I do not to the body is sugar, much fat, much manganese.

It´s great enough, I am slowly but over longer time frames constantly improving. The fat/sugar issue I have read only recently. Nobody has seen that there might be an important connection between inducible nitric oxide synthase and acetylcholine.

Hope you can try it (with success).

 

[outdamnspot]

I doubt you would have this issue with pure ascorbic acid, which is just C6H8O6, and which I used at about 24 g/d to achieve highest possible and therapeutic serum levels for the last 10 years. Which also circumvents any problems with fillers and binder - often not as non-toxic as vitamin C - at such high amounts. I also highly doubt just one pill of vitamin C would have done anything in my case.

The Vitamin C I take contains Hesperidin and Bioflavonoids, and is time-release. There's also some fillers in the capsules (cellulose gum, stearic acid etc.). I find the time-release more gentle than pure ascorbic acid, and it also helps me sleep. A year ago, I had no issues taking it. Now, I can't tell if it makes me worse, or just doesn't help much, since my health has declined a lot anyway.

 

[outdamnspot]

I doubt you would have this issue with pure ascorbic acid, which is just C6H8O6, and which I used at about 24 g/d to achieve highest possible and therapeutic serum levels for the last 10 years. Which also circumvents any problems with fillers and binder - often not as non-toxic as vitamin C - at such high amounts. I also highly doubt just one pill of vitamin C would have done anything in my case.

Do you think that if one is salicylate-sensitive, the filler in pills would be enough to cause a strong reaction?

 

[pamojja]

C7H6O3

C6H8O6

The fist image is salicylic acid, the second ascorbic acid. Therefore it's almost impossible to react to pure ascorbic acid with salicylate-sensitivity. And heard of only one guy on the Internet till now who reported having sensitivity to vitamin C itself, even from oranges!?!

Still not believe anyone could be indeed sensitive to vitamin C - without any we would be death - in my opinion it could only come from the fillers/binders. Or it's a different sensitivity all together.

 

[outdamnspot]

The fist image is salicylic acid, the second ascorbic acid. Therefore it's almost impossible to react to pure ascorbic acid with salicylate-sensitivity. And heard of only one guy on the Internet till now who reported having sensitivity to vitamin C itself, even from oranges!?!

Still not believe anyone could be indeed sensitive to vitamin C - without any we would be death - in my opinion it could only come from the fillers/binders. Or it's a different sensitivity all together.

Sorry, I was referring to the fillers. Right now the time release vitamin C (which contains fillers) is my only option to sleep; ascorbic acid doesn't help the same way. So I was just wondering how extreme it's necessary to go in the avoidance of salicylates because they seem to be in everything. I have noticed a severe reaction to eating avocados, so it definitely seems like a possibility (unless something else in them is the culprit), but it also cuts down my options a lot