Looking for diagnosis or any advice...

Mick

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Hi to all,

I basically never post such questions and such problems to be solved by the community but I am kind of stuck and I wonder what other might think about it.

My CFS has a lot to do with gut problems but I can't pinpoint what these problems are. I can't name it so I can't treat it.

To cut a long story short the working theory is:
- I started to have gut problems which casued inflammation, joint pain/arthritis and produced also antibodies against muscles
- Antibodies against muscles cause me neuromyotonia and I have EMG test results confirming that but there is a problem with progressing with the treatment in this area... It's quite possible that neuromyotonia is not associated with gut problems in any way, still they both try hard to make me miserable.
- In the meantime, I got completely CoQ10 deficient. I was bed-bound in 2016-2019. My gut was one big never-healing wound. This was shown during gastroscopy. Zinc carnosine and then CoQ10 helped heal it completely but I also got allergic to many supplements when trying to heal the gut.
- In the meantime I also developed gout. It was not that intense, actually it might not even exist on its own but when combined with joint arthritis from gut, it made things literally 10 times worse. This has been of course taken care of - Allopurinol and sodium bicarbonate and it's gone.

So, how do these gut problems look like?
- A lot of allergies to: tomatoes, pepper (paprika), black pepper, oregano, Iberogast (it helped me but then I got allergic to it), menthol (enteric-coated menthol is used as a treatment for IBS-C but I also got allergic to it), slippery elm, olives (less allergic), corn (even less allergic), wheat, eggs, cheese (even less allergic, to the point that after healing the gut I could start eating them), meat is still a no-no, I'm very allergic to it.
- the symptoms of the allergy? Joint pain/inflammation, tendon pain/inflammation and some kind of stinging
- vitamin C makes this inflammation and pain completely unbearable. For many years I tried to figure out why... For example maybe because it makes my blood more acidic and uric acid crystal crystallize... but no, that is not the correct answer. Vitamin C simply makes immune system much more active and wanting to fight the threat (which is not there of course).
- fasting helps for this allergy. 3 day long fasting will completely rid me of inflammation and even I can eat normally for 1-2 days (ie. food will not cause infammation and even it will not make me constipated). But here is the problem: I can't fast for that long because it makes me feel like I'm going to die. It wasn't like this a few years ago - I could fast for many days. I discovered that pregnenolone makes me more resilient and I can fast for longer. Supposedly, this would mean that I might have adrenal exhaustion but or maybe there is a pregnenolone steal or something like that... unfortunately there are articles on the web that say that there is no such thing as pregnenolone steal and that the mechanism must be different. I don't know what to think. Many years ago pregnenolone at the dose of 100 mg made me sick for many days, now it's helping me... that's kind of strange...
- going vegan after fasting and going vegan generally - helps with the inflammation. I really like being vegan but here is the problem: the muscles react especially badly to potassium that is in vegetables. Actually, this shouldn't happen as normally potassium is not a trigger in neuromyotonia but in my case it is and I also am pretty sure that I have neuromytonia, not anything else (everything else was excluded by exome sequencing as well as the EMG test which didn't show myotonic discharges for example but showed muscles fasciculation syndrome which is one of the symptoms of neuromyotonia - sorry for the detailed description but what can I do... I am pretty sure that when it gets cold the EMG technician will be able to pick up signals confirming directly that I have neuromyotonia and then there will be no doubt, unfortunately this test was done in a very hot weather). This is quite a vicious circle: I can't eat vegetables because of potassium and muscle pain and I can't eat anything else because it will make my joint hurt as well as make me produce more antibodies against muscles what will make them worse
- taking Creon (this enzyme) is simply a terrible experience for me. It probably goes through the gut lining and digests nerves or something because it causes a burning/stinging sensation in my nerves directly. So it looks like a leaky gut.
- I have constipation - I defecate once every 2 days and it's a very small and dry volume. Even when I eat vegetables - the frequency and volume remain about the same.
- the doctors where I live - even paid out of pocket - are completely, completely, COMPLETELY useless. A few notable examples:
* my gut hurts here and here
** (the GI doctor) but the gut doesn't have any pain receptors so it can't hurt you...

* should I take CoQ10?
** (muscle neurologist) yup, you may take it but do you have any problems with your heart? Besides I can't recommend anything like that because it's not a herbal store

Jesus Christ, a muscle neurologist has no idea about mitochondrial cocktail and that CoQ10 is one of the main its ingredients... and so I didn't start taking CoQ10 in high doses in 2015, only 4 years later...

What is worse, you have to be very careful and very aware because they may hurt you by prescribing something completely incorrect. And of course when they hear about CFS then the visit ends abruptly with a referral to a psychiatrist.

And so... my latest plan is to go to a rheumatologist which if unfortunately 5 hours drive from here (and I won't go by train because I'm scared of Covid - in my condition I will not risk it, event though I am fully vaccinated but other people are not at all) but I started to think about it and what can I expect of her? That she confirms my inflammation when many others failed to do so? That she will believe me? I doubt that because I visited a few rheumos and without positive tests they will not believe you. She supposedly can watch your nails (or rather the tissue under nails) under the microscope and confirm that you have the inflammation. So it might be worth visiting her but I'm still very reluctant... 10 hours of driving both sides...

Many years ago I was prescribed sulfasalazine - it worked like a charm - it changes gut bacterial composition. But it was before all of this other crap happened, ie. CoQ10 deficiency and muscle involvement.

So, the question is: what do I do now?
Let's assume for a while that I don't want to go to a doctor - I only want to test myself using tests. Maybe stool tests, maybe blood tests...
But first of all I need to organize these symptoms and turn them into a working theory... I am pretty much sure that I have a leaky gut... but I can't take any known supplements because I am or will be pretty soon allergic to them... but something has to be done...

Mick
 

ljimbo423

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- taking Creon (this enzyme) is simply a terrible experience for me. It probably goes through the gut lining and digests nerves or something because it causes a burning/stinging sensation in my nerves directly. So it looks like a leaky gut.
I just switched digestive enzymes to a much stronger one, about 9 times stronger than the one I was taking! I'm not sure if it's killing inflammatory bacteria directly or breaking up biofilms in my gut, that these bacteria live in.

I don't think Protease from digestive enzymes can kill bacteria directly but it does break up bacterial biofilms in the gut and Creon is high in Protease.

But after 4 days of just taking 1/4 capsule, it makes me feel like I'm dying. I've experienced these symptoms before from bacteria being killed off in my gut, using oil of oregano, etc.

So I'm confident it's the lipopolysccharides from bacteria in my gut being killed off, that are getting into my bloodstream, causing an immune system reaction and making me feel like I'm deathly ill.

Dysbiosis and leaky gut can cause a wide range of symptoms. It can cause or contribute to food sensitivities/allergies, autoimmune diseases like arthritis and others and many, many other problems.
 
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hb8847

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Hi Mick. A lot of your post sounds identical to my situation particularly the following:

So, how do these gut problems look like?
- A lot of allergies to: tomatoes, pepper (paprika), black pepper, oregano, Iberogast (it helped me but then I got allergic to it), menthol (enteric-coated menthol is used
Joint pain/inflammation, tendon pain/inflammation
fasting helps for this allergy. 3 day long fasting will completely rid me of inflammation and even I can eat normally for 1-2 days (ie. food will not cause infammation and even it will not make me constipated). But here is the problem: I can't fast for that long because it makes me feel like I'm going to die.
I have constipation - I defecate once every 2 days
my gut hurts here and here
** (the GI doctor) but the gut doesn't have any pain receptors so it can't hurt yo
Have you looked into Mast Cell Activation Syndrome (MCAS)? There's a section here on this site dedicated to it, you might want to check it out.

I've had severe CFS since around 2015 and the main cause seemed to be food allergies. Like you it started with a few foods but over time progressed to include absolutely every food. And like you I get joint pain, stomach pain, constipation, etc, and fasting would help my symptoms.

Long story short I bounced around between CFS doctors whose focus was on trying to fix the intestinal tract (and gut bacterial dysbiosis) but I simply couldn't tolerate any of the treatments they put me on (antibiotics, probiotics, specific diets - all would trigger a bad reaction).

Eventually one doctor suggested MCAS. It's basically a condition of the immune system, whereby your mast cells (immune cells located in places like the gastrointestinal tract or the skin) are overly triggered, which puts your immune system on high alert and makes you feel like shit. And the symptoms can vary hugely, they can include everything from fatigue and joint pain to hives, anaphylaxis, diarrhea, you name it. Which is partly why it's so hard to pin down. But the big indicator for my doctor was that I was allergic to all foods.

I was tested for this last winter and the results came back positive. Since then I've been working with a specialist immunologist to treat it - as I said it's a fairly newly discovered condition and as such the treatments are pretty rudimentary, the goal is to reduce symptoms by trying different types of allergy medications.

As for why the Mast Cells are overactive, they don't know exactly what causes it, but they suspect it could be things like mould, or bacterial dysbiosis in the intestinal tract, and the toxins released then trigger the immune system. You Mast Cells become overly sensitive to things, to the point where things that aren't threats - like food - are now being perceived as threats, hence the multiple food intolerances. There are also other Mast Cell conditions, such as Mastocystis, whereby the body produces too many Mast Cells, but this is much rarer.

If I were you I'd maybe try and find someone to get this looked into, try and find a doctor with knowledge of MCAS (allergist, immunologist) if that's at all possible. There may be some charities where you live that can provide you some names of physicians, I don't know where you're located but here in the UK "Mast Cell Action UK" was very helpful to me.

In the meantime there are things you can try. Histamine is a known trigger of Mast Cells and histamine intolerance is very common in MCAS patients, you might want to try strictly avoiding all histamine-containing foods (there are lists online).

Other things that have helped me - the doctor put me on Vitamin D, 1000iu daily, which has helped a bit. The medications I've tried so far have been antihistamines (an H1 blocker and an H2 blocker, specifically Loratadine and Famotidine) and Ketotifen, which is a mast cell stabiliser, with the plan to add more if these don't work. If you're really struggling to get anywhere you could maybe try sourcing some of these medications online and see if they help, there's a thread on how to do that in the General Treatment section of the site if you're thinking about it.

Best of luck!
 
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Mick

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Thank you for your replies, they helped. And I ask for more.

So, for these past 3 days I've digested your replies and in the mean-time I've also tried some new (but actually old) methods.

Because I was quite despaired I got back to supplementing extremely high doses of CoQ10 (I don't know the milligrams exactly but it's a quarter of a teaspoon of CoQ10 powder, so it's probably somewhere in the vicinity od 1500-2000 mg), methylfolate (1 mg) and boron.

Actually, this post kind of inspired me or confirmed my idea:
Who knows if it would help, but I have had amazing results for the supplement Boron. It has taken seven months now from titrations of 180 mcg of a 3 mg tablet, but I have felt changes in my muscles, as well as had a huge shift in the amount of folate that I can tolerate. As Fred says, all these supplements work in concert.
So, @Kathevans , if you'd like to say how you're doing these days, that might be helpful.

Anyway, looks like CoQ10+methylfolate worked as my muscles/tendons started to respond to them - the pain subsided. Boron reduced inflammation even further. I took that CoQ10+methylfolate in the late evening that day I wrote you, and two hours later I couldn't fall asleep and I felt kind of itchy (CoQ10 in high doses does that) and almost shivering because of how good I felt. That feels like a wave coming. So it was pretty pretty pretty fast for me to get better, huh? Let's not jump to conclusions prematurely...

On the second day this combo pretty much wore off, I don't feel particularly well, but it's not bad neither. It kind of works - on the third day, ie. yesterday, I strained myself almost to the extreme - ie. when I got PEM two hours later I felt that I was gonna faint or something. It's hard to describe that feeling but when it is present, I know that something is very wrong. And usually after something like this it takes me a few days to get myself together. This time, it took 3 hours and I was pretty much OK.

I only wonder when it wears off. But maybe it is finally the time when some of the supplements will work the way it was intended? Let's take this methylfolate for example... I bought it 3 years ago - 60 tablets, and I am still trying to finish off that bottle. Everytime I start to take it, it makes me quite well for a few days, then it causes a terrible inflammation everywhere. And no, no dose adjustment, no taking niacin, nothing helps.
I have to stop taking it, take a break, until the next time... but now something is maybe different. I don't experience gout. I suspect (or rather am prettys sure of it) that everytime I took it, the inflammation did increase (as usual), but then this new inflammation started colliding with the inflammation caused by gout. How can I tell? Because I feel which inflammation is which and when they appear. If gouty inflammation is gone, then I will be able to take methylfolate without problems and interruptions and that may take me up to another, higher level of feeling well. But that's only my hope.

When it comes to supplements, my experience is like this:
(don't forget to enable English subtitles)

So, a trap after trap after trap, to the point when you really don't know what to do and what to think about this all.

But my immediate need to feel better has been kind of satisfied. The question is what next?
@hb8847 Yes, I have looked into MCAS.
I went to the only doctor who deals with MCAS. Unfortunately, he was one of these doctors who are not so good in their area, will not think out of the box, etc. He doesn't recognize MCAD (which is a broader term than MCAS, with more signalling molecules involved, like TNF-alfa if I remember correctly) and I probably don't have MCAS but rather MCAD - as more complicated to diagnose and more twisted disease.

Besides, back then I was CoQ10 deficient - so this added to the confusion.
Later I found out that MCAS people (ie. one facebook group) know him and he is like the last doctor on their list. He is that bad. But maybe, just maybe he will up his game. I see that he published a new paper recently, so maybe, just maybe, but I don't have too much hope. I should probably go to the UK and finish this once and for all. But there are problems: cost, covid, feeling fatigue - still, even though I went from bed-bound to able to drive for 4 hours a day (with long breaks and then I will die but at least that allows me to get some better doctors). I'd rather not go by public means of transport because if I get covid then anything can happen, even though I am vaccinated. This new variant may be rather terrible. But this allergist that I visited is still within my reach.

I will use this opportunity to ask you a few questions about how this should all look like because for me it all doesn't add up.
Before visiting him I had my blood tested - the tryptase test was negative. But then I found out that tryptase is rarely elevated (at least in people with MCAD) and you have to get lucky to have the positive result.
Then he performed skin prick tests - no allergy was found for any(!) of the tests.
Is it even possible if you have MCAS/MCAD?
Moreover, pure histamine in one of the pricks did not cause too much reaction.

Then he asked if I had tried any of the antihistamines. Yes, I had tried all of them (that are available OTC), and for a reason. They all make me very sleepy/drowsy. Even the one that is supposed to be the best on the market when it comes to making you sleepy and is a metabolite of a antihistamine from an earlier generation - didn't help. Finally MCAS people from the facebook group come up with the idea: diphenhydramine.
https://www.news-medical.net/drugs/Panadol-Night-Tablets.aspx
But it also contains paracetamol and I don't need it. That's a bummer but it's the only OTC drug available here. And I took it for a few days, and nothing changed in my gut symptoms, but I started to feel drowsy (surprise, surprise).
I used to take ranitidine for a long time (H1 antihistamine), obviously it didn't change anything...
But, there are other drugs in this cathegory, famotidine for example (as you suggested @hb8847). They may be more effective.
I learned that you have to basically try everything...
How long should I take it and what can I expect?
Another problem is that I finally regained my acidity in the stomach and I feel quite happy about it (this does speed up the passage of food... I have constipation now but before it was even worse) and now I would have to give it up.

I tried natural remedies. I took tons of quercetine Q995 - no effect.
I drank chamomile - there was quite a good effect - soothing my stomach, etc.
But the problem is that with so many tablets to take I completely forget to prepare it and drink it. It contains apigenin which is a cousin of luteolin which is recommended for MCAS.
Morever chamomile tea/apigenin costs pennies and luteolin costs a lot and it's not easy to buy it.
But I finally bought it, paid a lot, and... it causes the same reaction as some of the foods/spices.
I don't want to call it an allergic reaction because who knows but it is sourced from peanuts as far as I know or there must be something in it (a filler?) and that is it...

My very simple plan is to add chamomile and see what happens now. Unfortunately I have to drink it in the evening as it makes me sleepy and this adds to the complication of the logistics while preparing chamomile because usually in the evening I can barely move. So I'd have to prepare earlier in the day... complications. And you will not find a cheap chamomile extract to buy... the prices are outrageous. Besides people prefer chamomile tea anyway...

What really helps me recently is fisetin. It is quite possible that the last improvement in my gut condition is due to fisetin. Forgive my being so undecided - first my gut gets worse, then it gets better, it's hard to follow.

Yes, it's true, it's hard to follow. But the same thing applies to my overall condition. One supplement can only do so much... it can make you 10% better and then it can wear off for example... but then you take it again and it works and wears off again... but that means that you still have a problem and even though it seems that you are managing it (because these supplements work), actually you are not managing it that well because you can't find that one supplement (or drug) that will solve the issue.

But the truth is that also very small, incremental improvements may lead to a recovery...

Summing up - when it comes to MCAS, I've had a plan to go to a doctor (the same one as before) but first I think I should do something about it by myself - maybe some testing. I am able to order some of the tests - histamines in urine etc. They are expensive as hell but who knows, maybe it's worth it.

When it comes to the area that @ljimbo423 described, I tried quite a few different approaches.

- did sibo breath test but it was only for hydrogen producing bacteria - so basically worthless. Back then it was the only available test, I don't know if methane test is available now.

- took quite a few probiotics. The best one was Culturelle, health and wellnes (without inulin - I am "allergic" to it). It was soothing for my gut and the joint inflammation also was getting better. However, it always has to wear off... It was expensive so I figured that I will try Vivomixx. It is also soothing for my gut and you can divide one bag into smaller portions and it will last you for a long long time. However, my portions must have been too big because after some time of soothing it made my joint inflammation so much worse. So, I think, here we have a proof that my problems do have something to do with gut bacteria. Too much of it and I'm in big trouble even though the propoponents of probiotics say the more the better. That's exactly why Vivomixx bags have so much bacteria in them - 450 billion per bag. For some disorders it may work - not for me (regretfully).
How did I find that I am "allergic" to inulin? I bought a whole pound of the stuff. I took it a few times and it caused an "explosion" of bacteria in my gut and the well-known reaction, ie. joint inflammation. This is another indication that "bacterial overgrowth" theory of my problems has its merits.

- took quite a few digestive enzymes.
iherb.com/pr/source-naturals-daily-essential-enzymes-500-mg-240-capsules/1448
worked fine for me, made the passage of the food faster. But after 6 months of taking it I became "allergic" to it. "Allergic" in my own way of course, ie. taking it caused joint inflammation.
Then I started taking Candex. It worked very well, soothing, less joint inflammation, but then it wore off.

OK, it may seem that I have trouble with taking supplements for a longer time. But believe me, most of these I took for a year or longer, only then I stopped (and then ofter restarted to try them once again). The problem is that I usually take many many capsules - so it is annoying and it costs a lot. Some supplements gotta go.

If I had to choose what could I do in this area - I'd go with Candex. I am still not allergic to it...
So Candex goes back to my to do list but when will I actually restart using it?
I don't know, I'd rather play with methylfolate now, then go to the MCAS allergist and then maybe Candex...

As you can see, I have some symptoms of MCAD and some symptoms of gut dysbiosis or Sibo. And I have to consider both of them as it is quite likely that they both play tricks on me at the same time. If I take something that works in one area, it is harmful in the other area and so on. This is exactly what was going on before I started taking allopurinol for gout - any inflammation that was unfolding was effectively made a dosen times worse then it should be because this inflammation was a trigger for gout. And gout was a trigger for this inflammation as well...

In the meantime I also have to deal with my muscles (I am currently waiting for an important test and there isn't even a due date when this test comes back, I love it).

So, can one speed this process up? I'd wish. But it doesn't seem viable.
And I have so many plans and it really makes so angry to see how people grow their businesses etc. and I... can do nothing. Many times I get that "good advice" that I should realize my plans when they see how many plans I have because, as they say, "Come on, what's stopping you". But you know how this goes too well.

Mick
 

Woof!

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Hi @Mick,

Have you ever looked into the possibility of starch sensitivity? Starch is in soooo many tablet and capsule formulations that you may think you're sensitive to the main ingredient, but you're actually reacting to the corn/rice/tapioca starch binder. Starch is in stamps, envelopes, toothpastes, powdered gloves, processed foods, gravies, cosmetics, many vitamins & drugs...oodles of things, but it IS possible to find starch-free products. I am highly starch-sensitive (migraines, Sjogrens Syndrome dry eyes/nose/mouth, vertigo & ME/CFS), so I know this well. On the flip side, if I can avoid the stuff, life is a heck of a lot better.

@Lynne
 

Viala

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@Mick Tomatoes and paprika sound like a reaction to nightshades, white potatoes are nightshades as well, all of them are veggies high in potassium, maybe the problem is not with potassium but with nightshades. A lot of people has bad reactions to wheat and corn, along with soy and dairy. You could also check if you react to foods high in oxalates like spinach, potatoes, beets, they can form crystals and cause pain as well, vitamin C may be metabolized to oxalates.

Yes meat and uric acid, people with gout are recommended to stay on a low meat diet. I believe alkaline minerals may help here like potassium and magnesium. Magnesium may be helpful with constipation and zinc usually works the other way, our diets are often too low in both of them.

I like your comparison to that game :rofl: searching for what really works can be frustrating sometimes.
 

Mick

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I just figured out something out. I need to repeat all the treatments that I used in the past because I have now got rid of CoQ10 deficiency. So, my gut finally heals. And if it heals, then it is possible that a treatment like Candex may be much more effective - for example Candex may kill candida and the gut will heal and close the leaky junctions (it's just an example as I am not even going to speculate how Candex works - there are many controversies here, as far as I remember, I read many theories that Candex can't even work but it does and even I can attest to it - maybe it breaks the bacteria film instead of candida, who knows).

So, today I started taking Candex that I have been storing in my fridge for the past two years. Hopefully, it is still good to take, ie. effective. If it is, I will order more.

So, say for a month, I will take Candex, boron and methylfolate - a trio from hell !!! :D (because they always kind of hurt me in the long run)
And I'll see what happens...
I still have to wait probably for a month for that stupid muscle blood test result - vgkc antibodies if anyone is interested - and before I receive that result it's rather pointless to go to any doctor. If the result is positive, ie. I have the antibodies, then it will be a strong evidence that there is something really really wrong with my immune system, and something will have to be done, finally.

I can already see that boron makes me kind of sleepy and exhausted, I will have to tirtrate the dose. Now I take 3 mg of "Boron Citrate and Aspartate" daily, I will try 0,75 mg. This seems to be a very low dose but you take what you are able to take and that's that.

I wonder if someone, perhaps @hb8847 could point me to a thread or an external page where all of OTC treatments for MCAS are described. I can't seem to find something that would blow my mind or explain in more detail what to do... I know a lot of these treatments and tried a lot and nothing seems to have worked. Maybe I am missing something?
 

Kadar

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@Mick Be careful with boron! It's side effects may last 2-3 weeks. I was feeling tired and sleepy from boron too, I guess it's because of fluoride detox. Boron will likely deplete b2 and b6 (i experience this right now). I need a lot of b2 when I take boron or I will have heart palpitations, muscle cramps, anxiety. I also have found that I need iodine to lower my b2 need during taking boron. Iodine decreased this need a lot. Also I don't recommend using lots of molybdenum when taking boron. Seems that they have some synergy as was mentioned on another tread. Good luck :hug:

Upd: taking more iodine eventually made me b2 deficient again
 
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hb8847

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I wonder if someone, perhaps @hb8847 could point me to a thread or an external page where all of OTC treatments for MCAS are described. I can't seem to find something that would blow my mind or explain in more detail what to do... I know a lot of these treatments and tried a lot and nothing seems to have worked. Maybe I am missing something?
Here is the MCAS section of this forum, might be worth having a read.

As for OTC treatments, I don't know where you're based but here in the UK there aren't too many. H1 antihistamines I know are available (like Cetirizine/Loratadine) but these did nothing for me. H2 antihistamines (like Famotidine/Ranitidine) are on prescription here but I think they're available OTC in the US, but these didn't help me massively either.

Thing is those two are just Histamine blockers so failure to respond to either of these wouldn't necessarily rule out Mast Cell issues, and I'm pretty sure most of the Mast Cell stabiliser medications are on prescription. I've just started one called Ketotifen - early days but it seems to be helping slightly. The next on the list is Sodium Cromolyn, which apparently often helps people with food intolerance MCAS symptoms specifically.

Then there are supplements which are supposed to help, like Vitamin D, Quercetin, Green tea. Some people report great things from these but they didn't seem to help me.

Might be worth trying the OTC antihistamines if you can find them, and then stick to a low histamine diet (because histamine is often a trigger for MCAS sufferers) and try a couple of the supplements to see if they help. I'd probably try to reach out to a specialist who knows what they're talking about (allergist/immunologist), maybe try and get a blood test for histamine but also other mast cell mediators (like prostaglandin, tryptase).

Honestly I know you suggested you weren't sure it was the Mast Cell route but your symptoms are so similar to mine I'd be shocked if you didn't have some sort of Mast Cell issue, and I've tested positive for the aforementioned blood tests.

Also you mentioned earlier MCAD - this actually means "Mast Cell Activation Disorders", which covers everything from MCAS to Mastocystis (which is what I think you were referring to earlier, whereby your body just produces too many mast cells, and it's considerably rarer, far more likely you'd have MCAS if anything).

Best of luck
 

Mick

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Here is the MCAS section of this forum, might be worth having a read.
Yeah, I'm reading it as we speak and read many years ago, too. Unfortunately, it's not that easy to go through all the threads. I myself can add Luteolin, Fisetin and Green Coffee and Chamomile extract to the list. Luteolin didn't help (or rather caused an attack (of allergy or whatever)) but Fisetin, Green Coffee extract and Chamomile help. Fisetin and Green Coffee lower the inflammation and Chamomile soothes the stomach (as well as heals it) so the inflammation doesn't even start. That's the way I feel about theses supplements. There is also another controversial supplement: histidine. One might think that taking histidine may be a very bad idea - afterall histamine is produced from histidine. But it's not that simple and if you start supplementing histidine slowly you may see that it actually lowers histamine production in the long run. It's probably because histidine reduces production of enzymes responsible for histamine production. I don't know and I don't care :D but it worked for me - for some time. Then it caused me stomach acid overproduction, ie. burning and burning will lead back to inflammation. So now I am going back to taking histidine (will restart maybe in a week or so).

Yesterday I took Candex. Very soothing. Moreover I kind of tested this whole new supplementation regime by overeating slightly*. Nothing happened, no joint inflammation, and usually I'd be suffering a lot. So boron + methylfolate and possibly Candex work...

* Overeating slightly in my case doesn't even mean that I eat that much. I'm constipated most of the time so even small quantities make me feel full.

Today I will try to fast for the whole day (this actually means 36 hours of fasting: night, day, night). Why? Recently fasting makes me feel terrible. So, the theory is that maybe it was because of folate deficiency. When you are deficient in anything then fasting will make you feel terrible. This was my experience when I was zinc deficient and omega-3 deficient etc. So, today I will be fast-testing for folate deficiency.

In my case fasting is the best when it comes to reducing my joint symptoms, but only when I am able to go through it without problems. I used to eat once a day, two small slices of bread and I was also doing quite OK, so it would be great to be able to do that once again.

Plus, I need to lose weight. I'm not even obese but the problem is that I am a lean person by design (a tall and lean person). And now, any belly fat causes problems with breathing and increases constipation.

Maybe it was TMI or maybe it was too long but this is just to show you that many things happen at once and you have to be aware of them. Actually, I'd rather not have such problems and not even be aware of them but I am. Many people are not aware of them or underestimate them and they end up with much larger problems.


Be careful with boron! It's side effects may last 2-3 weeks. I was feeling tired and sleepy from boron too, I guess it's because of fluoride detox.
Duely noted... I will take B2 just in case. Some of the supplements contain boron and B2.
This one, for example:
https://www.amazon.com/Life-Extension-Boron-Vegetarian-Capsules/dp/B000LLYDEM

But now the question is: how can one achieve a balance between boron and B2 vitamin? I assume that if I take too much of B2 vitamin, supplementing boron might not be noticable at all (ie. it will be excreted with B2 vitamin immediately).
In any case, it is worth supplementing with boron in small doses and not to stop it all together, just in case. And small doses should not cause a lot of problems with detox (I don't know if I will detox fluoride but if I do that's even better). It will take longer to achieve intended results, however.
 

Mick

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Because Candex seems to work I decided to pursue the Candida Albicans treatment path. And so the first on my list to try was MCT oil. Actually, I'm re-trying it (how many times...) because last time after quite a long time of taking it caused me diarrhea. It's always like that, I need to take breaks from it and that's it. And I need to take it evenly distributed in food, there is no way around it but I like the taste, so there is no problem.

So the situation was like this: I was after the two-hour strain and already quite exhausted. What to do, what to do... I don't know but I had planned to take MCT oil anyway, so I took it. The effect was quite dramatic - very very good, I could go for another 4 hours, and it was absolutely necessary (and I couldn't get anyone to replace me, people give a f**k). I know that that's not it, but I will call it a second-wind phenomenon. Normally, after such a strain, there would be a lot of PEM and a lot of (delayed) soreness (the delay in peak soreness in my case is usually 24 hours after ending the strain). OK, so this one time MCT oil seems to have worked very well.

But, of course, subsequent use did not cause such an obvious effect. But I will be taking it, hoping that it will kill candida and that it will help put some more strain on my muscles. Every little bit counts!
(Sidenote: I don't have LCHAD)
And so, because every little bit counts, I took high dose of carnitine - 2000 mg or so... who knows, I take it by teaspoons and it was half of teaspoon this time. The effect was rather insignificant - I felt a few fast heartbeats and that was it. I became quite used to carnitine where earlier it could help me quite significantly - at least sometimes.

So, now I'm thinking - what else could I take... maybe another component of mitochondrial cocktail (now I am on CoQ10, MCT, carnitine).

MitoQ is perhaps not that bad but it still doesn't stop my soreness or PEM, so there is a slight effect but it's completely not cost-effective.

I heard of Alpha Ketoglutaric Acid which by the way is antisenolytic.
I heard of succinic acid - and I bought it but it is so sour that I could not even taste it properly and it would wreak havoc on my stomach. But now I figured that I will mix it with baking soda (neutralize it) and see what happens. Of course, I will have to distribute it evenly in food.

Does anyone have any experience/positive outcome with any of these two?

What else could I take?

I'd almost forget. Quite long time ago I bought grapefruit seed extract to kill candida. It's standing on the shelf and hunting me... but I'm afraid to take it with my fragile stomach. I don't know what to do... I need advice how to deal with it... the dose is 10 drops dissolved in a glass of water. Maybe I should start with one drop?

Of course, as usual, you can hit me with any ideas that will cross your mind...
 

Kadar

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@Mick I had good success with biotin when I had candida after supplementing with vitamin A. Seems vitamin A depletes biotin. I checked nutrients in liver (which is high in vit A) and noticed it has 300% RDA of biotin. And I saw biotin in candida protocols
 

Mick

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Biotin - done and done, thanks!

I can take high doses o biotin without any problem, without side effects. The only thing that you have to remember is that some lab tests may be too high or too low - biotin interferes with lab tests.
 

Kadar

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+ what comes to mind:
I heard vitamin A is needed to make copper bioavailable. Copper has antiseptic properties. Liquid Chlorophyll I always see in candida protocols seems to be there because it's rich in copper.
If you decide to try vit A, I recommend to buy a brend that only has fish liver oil source (I take Bluebonnet's) without any synthethics like retinyl palmitate/ acetate. I tried that and had a sense it made my vit A deficiency even worse. Also, without vit A cofactors like B2, B3, B6, zinc, magnesium and molybdenum vitamin A won't be active.

you can check info about allergies/histamine reactions by dr. Eric Berg / Chris Masterjohn on youtube. They explain what nutrients you may lack so that's why you're intolerant to some food. It's mostly all B vitamins (b2,b6 (P-5-P), folate, b12), vitamin A, copper, zinc, etc... as one of ideas why you may be sensitive

UPD + vit C depletes copper that may explain why you react badly to it (not enough of bioavailable copper)
 

Mick

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So, I took biotin in higher doses, like 4 times 5 mg sublingually as this was recommended here:

https://forums.phoenixrising.me/threads/potential-remedy-for-cfs-fibromyalgia-biotin.2509/

With higher doses I noticed immediate results, but I never got to test it while excercising because...
biotin causes me a terrible anxiety... wow... I am basically shaking after taking it + I am itchy (just a bit but still).

What do I do? Normally I would take tryptophan, but I read elsewhere that it is not so good to take tryptophan when you fight candida as it is converted to tryptophol which is bad for you and it makes you sleepy. And tryptophan does make me very sleepy...

So I have no idea what to do....
 

Kadar

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@Mick biotin as many other b vitamins may deplete b2 or potassium that may be a reason why you have anxiety/heart palpitations. Itchy probably because of b2 drop (or could be detox?) because b2 has immune properties in my experience. There also may be some connections to other b vitamins depletions induced by biotin
 

Kadar

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Is your reaction typical as herx reaction you had before or you haven't experienced that before? They also recommend chlorophyll if you experience herx reaction from candida dying. As I said, I think it's because it contain copper. And when I were copper deficient I had anxiety and heart palpitations too (+ feeling cold)
 

Mick

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Ok, I tried to figure out what is wrong at the moment. Multivitamin B + B2 slightly helped (so there is a reaction and there is a dependency) but that's not exactly what I'd need. Then I stopped biotin for 2 days and I am getting better, ie. less sleepy, less wired and I have less anxiety. I also took tryptophan and Gaba - also to be continued. Gaba actually may make you less sleepy, ie. when you take it before going to sleep your sleep will be deeper and thus you'll be less sleepy during the day, even when something like biotin makes you more sleepy.

Recently, I have a lot of luck - whatever I do, whatever video I watch, it seems that it was exactly what I needed. Well, after years of experience you know more or less what works and how it works and how to buy it and where to look for it. So for now the best thing that works is Candex. I basically got rid of (residual) joint pain. And what is good now - I don't feel hunger at all and that's what is most needed now that I want to lose weight. Now, to continue healing gut, I will start taking some probiotics, rather in very small doses or every other day.

There is another thing that I've come across - youtube suggested a video to me:

I basically never watch these anymore but this time I watched this and it basically says: don't eat milk and cheese as there is estrogen in dairy and it will make you painful and fat. So I guess I will have to switch back to the vegan regime. Who am I to argue with youtube's suggestions algorithm, especially that I know about estrogen in milk for a long time and getting rid of it helped a lot earlier but then I became allergic to different spices and vegetables (black pepper, paprika, oregano, garlic, and so many more). So now the idea is to buy vegan cheese and to eat not as healthy as I used but at least eat healthier. Unfortunately all of these cheeses that are available have spices in them and afair some of them caused an allergic reaction. But I will try all of them once again or I will rotate them to see how it goes.
I have problems with low testosterone from the very beginning and I know symptoms of low testosterone. Frankly, the way I feel now kind of feels like low testosterone. But it may be that estrogen is taking its toll on me. So I will try the new approach.

Also, I will try dibencozide as an addition to methylfolate that I take.

The worst thing, ie. muscle cramps, still remains to be solved... but there is rather no way to solve it except for taking prescription drugs. But methylfolate and dibencozide may improve muscles' condition to the point where I will be able to survive until the diagnosis is confirmed (which won't be fast and this is ridiculous).