Looking for diagnosis or any advice...

Mick

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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.
Wow, it takes some time for me to process any info but here I am - I just bought chlorophyll. I found papers that confirm its effectiveness in combating candida.

Bought similar to this one:
iherb.com/pr/now-foods-liquid-chlorophyll-mint-flavor-16-fl-oz-473-ml/5028

the problem is that they all contain peppermint oil so it will immediately cause gut problems or maybe it won't in small doses? We'll see. Supposedly this is a very mild mint flavor. I had only 3 minutes to make up my mind to qualify for the next day shipment and receive it on Friday and not on Monday and here we are.

I can't find any inexpensive chlorophyll around here that would be mint-free. Bummer.

And because of that I'm also considering wheatgrass - it also contains chlorophyll, though in much smaller quantities, and also many other things that are supposed to be good for you but who knows... plus it won't be the same as pure chlorophyll...
 
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Gut problems are getting quite common these days. I too had it a few years back, but I followed certain things that kept all those problems away. They are:

I started eating whole, unprocessed foods and included plenty of fiber from foods like vegetables, beans, nuts, seeds, and whole grains in my diet.

As I had food allergies, I had to cut out gluten, dairy, yeast, corn, soy, and eggs for a week. Included enough digestive enzymes in my gut. When we can’t convert the foods we eat, the gut can’t absorb them. So I took broad-spectrum digestive enzymes with food.

Got good fat and extra omega-3 supplements, which helped me cool inflammation in the gut. I also used gut-healing nutrients such as glutamine and zinc to repair the lining in the gut so it can resume its normal function.
 

Mick

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Gut problems are getting quite common these days. I too had it a few years back, but I followed certain things that kept all those problems away.
As I had food allergies, I had to cut out gluten, dairy, yeast, corn, soy, and eggs for a week.
Congrats on the recovery, I kind of envy you... :D
I don't know the extent of your problems but it looks like they were not that serious. Cutting gluten, dairy, etc. only for a week... I wish this had worked for me so fast when I tried it. But it didn't, in fact, nothing seemed to work.

Only after years and years of trial and error was I able to figure out why a particular supplement (or method of treatment) works for me.

I had to learn about each and every solution the hard way. It's strange how things that are seemingly not associated with each other actually affect you - and in a bad way.

Back in 2002, when these problems started, I only had a dial-up Internet connection. It was a mess and it cost a ton. I wasn't able to get an ADSL connection until 2005 because the phone company messed up. Had I known that this will delay my treatment a few years, I would have bought a much more expensive mobile connection. It cost a ridiculous amount of money but it would be still cheaper than the doctors that I had to go to because I didn't know what to do, and the doctors... more on them in a second.

Then, after I got a broadband connection, I found that there are no resources on the Internet at all, maybe except for research papers, so I started to study them but then I found that I don't understand many of them. It took a few years and in 2012 I finally started an elimination diet and fasting. But the funny thing was that my elimination diet lead me to eat rice only - because who would be allergic to rice? Yep, you guessed it, I was.

Going to doctors was pointless most of the time from the very beginning. I had food allergies so severe that it caused erosion in the stomach wall, they prescribed antacids. After all, these helped 99% of the patients, who would care about poor Mick? These food allergies caused joint pain, rheumos didn't even deem it possible.

Only after several years had I found out that one of them actually started believing in treatment with a vegan diet and prescribing it to patients. Of course, they made her leave the faculty or maybe she left on her own, either way, now you have to pay for the visit so much that it's beyond my capabilities. Especially that I still know much more than her. And visiting her back then still wouldn't have had any benefits because there was one basic problem with me that nobody could solve, even me (though I'm still considering visiting her in the near future, maybe).

I had a severe CoQ10 deficiency which I couldn't detect because even taking CoQ10 didn't help. The problem was a dose that was too small and not absorbable enough. Seems like I'm repeating myself because I think I wrote about it already.

Now that this deficiency has been taken care of, many of my allergies are finally gone - and this is because my gut wall healed and there is no direct contact between gut (or rather blood) and food allergens. So after a few years of staying on a healthy vegan diet, I could switch to bread and cheese. And this was just in time because it just so happened that I became severely allergic to many vegetables and spices and this made it extremely difficult for me to stay on this vegan diet. I could only eat broccoli, carrots, beets, potatoes and a few others. But no tomatoes, no spices: pepper, oregano, paprika, rosemary, mushroom, olives, etc. And basically all of the pre-packaged vegan dishes contain spices, and why wouldn't they? It was good and tasty while it tasted but not anymore...

So, after solving this problem with CoQ10 deficiency, it looks like many, if not all, of the supplements that I used to take, finally started working. And so I take ribose, MCT oil, L-carnitine, green tea, green coffee, and many more. As long as I rotate them frequently - they work and they don't cause side effects. Take MCT oil for example - it may serve as a temporary stamina boost for like two hours (which are sometimes crucial) but if taken every day it loses its ability to boost stamina and it starts to bother my stomach and sometimes it gets really ugly. Ribose behaves similarly...

But the best recent development is Candex which basically made my joints pain-free, despite me ingesting bread and cheese all the time which are very good nourishment for Candida. So, another obstacle out of the way.

Now, the obstacle that I need to overcome, is muscle pain/DOMS otherwise known as PEM. Well, actually maybe these are not the same thing but who cares.

That muscle pain may be caused by some kind of deficiency or a structural muscle/tendon change that was caused by a deficiency (we may imagine that CoQ10 deficiency might have stopped collagen production and that causes structural disintegrity and thus my tendons and joints and muscles hurt) or by another problem that I have ie. it's probably neuromyotonia.

So now my approach is two-fold. I'm trying to heal my muscles by whatever method I can find (recently I started taking dibecozide) and I'm trying to get to a doctor who would diagnose me correctly. But the problem is that symptoms come and go, the doctors are not knowledgeable, etc. And I'm waiting for some of the test results for the third month already and I don't understand why it has to take so long...

So, all is left for me to do now is to take another supplement, hoping that it might help heal the muscles. Because it's not the cramps that are the worst, it's PEM/DOMS that follows. For many years I suffered through cramps and I could go on quite normally and without PEM but not anymore. Or maybe it's just because prolonged cramps cause permanent damage to the muscle tissue, who knows... (actually this permanent damage is also reversible but you have to stop the cramps and start taking steroids and this requires the doctor's attention, unfortunately).

The conversation in this thread nudged me in the right direction, either directly (by telling me what to take) or indirectly (by reminding me of some issues and I figured out to take on my own what to take).

So people, thank you, and keep up the good work!
Ie. keep giving me further advice... maybe we will find the solution...
 

Mick

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And so I just figured out something else. I always figure out something new when I write posts here...

My testosterone levels were always below normal for my age group and barely within normal range (1 unit above the low threshold of the normal range so this was not a normal level, maybe normal for an 80-year old)

Why would that testosterone be so low? I didn't know and now I know or rather strongly suspect. Dairy products. I used to eat a lot of dairy, esp. yoghurt because it made me feel much better. Calcium in dairy made my muscles less crampy - this I figured many years ago (it doesn't work anymore, the cramps are too strong now). So I ate yoghurt, and cheese and butter... basically for every meal.

Wanna see how much estrogen different dairy product have?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4524299/
(table 2)


Especially butter is very bad for you in this respect. Fat+estrogen in butter and cheese is a straight way to obesity and prostate cancer (among other cancers). So it's not only fat per se, also estrogen plays a significant role.

Plus estrogen will lower your testosterone.
I'm in the process of changing my foods into vegan versions, at least most of them.
Butter -> margarine (one needs to look for a version without butter or buttermilk additives, my first attempt has failed in this respect)
Cheese -> vegan cheese (not very tasty but I will at least replace half of the cheese with the vegan version, hopefully with time I will be able to replace all of it).

I will also return to taking some testosterone boosting supplements and I am pretty sure that it will improve my muscles' condition. Though probably it will not eliminate PEM/DOMS.

EDIT: So on one hand dairy supplied me with calcium which made me better, on the other hand it supplied me with estrogen which made my muscle much more susceptive to breakdown.
Now, this all will be rectified. I will be eating vegan dairy alternatives but they don't provide that much calcium, I suppose. So I will have to supplement calcium. But surely, I will get rid of this excess estrogen so testosterone should go up, especially with some boosting supplements. And basically I take betasitosterol which is converted to a version which has much higher anabolic properties than natural testosterone. They call it natural doping. But who knows if it works as described...
 
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Kadar

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I found boron doesn't give me diarrhea (which I take as a sign of candida detox ) if taken without iodine. And boron seems to be much more effective when you are sufficient with molybdenum. But taking iodine causes another problems like halogens detox which may be very dangerous in my experience. Though diarrhea I described may be halogen detox, not candida. Who knows. By the way, boron is known to rise testosterone and other hormones, it affects magnesium and calcium metabolism which is good for muscles. So maybe you really need boron
 
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Mick

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By the way, boron is known to rise testosterone and other hormones, it affects magnesium and calcium metabolism which is good for muscles. So maybe you really need boron
I tested testosterone blood level after taking boron (but it was a few years ago) and incidentally with and without ingesting dairy (with - it was the lowest level; without - it was a bit higher level so I was happy that something really good was going on; now I am pretty sure that it was because I stopped dairy). The problem is that I ingested too much dairy because it made me feel quite good. I remember that after stopping dairy (there was an attempt to stop it) for two weeks I basically had a breakdown. My muscles got sore. But it was still before I knew that there is something wrong going on with my muscles. So I said to myself - back to dairy, what can I do? And the funny thing was that I actually tried to avoid calcium because I read that it causes artery calcification. Besides all these yogurts and cheese were quite expensive for a student's pocket. So I was trying to save some money, too. Whatever I would have done - I would have done wrong because I need calcium and protein and no estrogen and boron. And yeah, let's not forget about protein.
Vegan diet does not provide me with sufficient quantities of protein. This is confirmed by blood tests. You could try to convince me that all you need to do is to eat beans and your protein level will be fine. It may be true for most of people but some, including me, will have trouble digesting beans. And it took me a few years before my blood protein level got below normal.
So now the plan is: calcium (from supplements), protein (from foods and supplements), no estrogen (will try to eliminate milk as much as possible, possibly down to zero) and boron (here, I have to take 0,5 mg per day, as it makes me sleepy but hopefully I will be able to increase with time).

And protein supplementation is a science in and of itself...
 

Mick

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During last week a lot happened and one new supplement arrived.

So, it looks like we have a small breakthrough thanks to this supplement. Though small, this information may be useful for other people who have a similar kind of PEM (and you never know which type you have until you try a supplement that helps with that type).

This supplement is:
iherb.com/pr/natural-factors-bluerich-super-strength-blueberry-concentrate-500-mg-90-softgels/7049
This supplement is inexpensive enough for me to use it.

But what's the rationale behind using it?
The whole story started 20 years ago when I found that frozen tart cherries help alleviate my fatique and later even PEM. Cherries and anthocyanins in them are known for their anti-inflammatory properties.

So I used to ingest 1 up to 2 pounds of frozen cherries per day and it helped me survive for 15 years.
Cherries were gradually losing their effectiveness so I had to up the dose. With the higher dose came the necessity to neutralize the acidic pH of cherries, so I started adding baking soda, and it worked fine.

Unfortunately, in 2015 I started developing this problem with allergies and/or MCAD and suddenly cherries, instead of helping me, made me very inflamed and sore. I actually attribute this inflammation to high vitamin C content of cherries. After taking vitamin C in tablets a similar kind of inflammation was making my life miserable.

So, for years I was trying to find a solution that would somehow work for PEM but didn't contain vitamin C.
I tried cherry concentrate capsules - to no avail. The dose was too small, the capsules were ineffective and very expensive.

Finally, I found this blueberry concentrate and it works. I take a higher dose, up to 10 capsules per day. Don't try this at home - if you are not used to that much anthocyanins. Even I started with 3 capsules per day to see if it works and doesn't cause any side effects, like the one described above, ie. inflammation and soreness.

So, with that supplement I was able to put strain on my muscles (but it was still rather light work) for 3 days. On the 4-th day I felt that PEM is inevitable but... I took even more capsules and I kind of recovered and could still work during the second half of the day.

Today, is the fifth day and I still have PEM kind of under control, but something weird is going on. In many muscles and one muscle in particular I felt stabbing after waking up - which disappeared after taking more capsules. But this is a warning sign that I have to stop and rest, and I will rest today, for one day only, and continue to work tomorrow as this is quite urgent and only one day of this work is left.

After tomorrow I will be able to balance work and rest as they should be balanced in my case: a half-hour of work, a half-hour of rest and repeat the whole cycle, stop after four cycles, six when things are really urgent.

The worst thing is that I just run out of this blueberry concentrate... I've just ordered 5 bottles of it in order to keep experimenting with it.

I also have this feeling that without methylfolate and dibencozide this improvement and quite fast healing wouldn't have been possible at all...

Dang it, I should have ordered powdered blueberry extract, which is possibly even cheaper than the one they sell at iherb:
https://www.bulksupplements.com/products/blueberry-extract-powder?variant=32133380604015

But the shipping to the EU is more expensive ($65.68) than the product itself ($27.96). OMFG, they must be insane.

And at Amazon this product is never available.
Anyways, I will have to explore this option next. Maybe this blueberry extract powder is available somewhere where shipping rates are cheaper.
 
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i know you say you cant eat meat because of allergies, what kind of allergies? and the meat you are eating is is 100% grass fed meat from the farm? also with gut issues, your best friend will be red meat, but soft meat like ground beef, and do not cook it too much, you want to have a little raw in the middle.I cured most of my gut issues by just consuming quality meat. lots of articles out there as well and thousands of ppl with GI issues that have been cured by just eating meat.
 
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PS: meantime if you have constipation issues still, magnesium powder at least 700mg with 10,000 mg vitamin C powder (maybe more depending person to person), to flush out as these are amazing natural laxatives. hope this helps, it helped me alot when i was healing
 
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Mick

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i know you say you cant eat meat because of allergies, what kind of allergies? and the meat you are eating is is 100% grass fed meat from the farm? also with gut issues, your best friend will be red meat
It took me quite a while to compose the reply because with meat things are quite complicated.

Actually, the worst allergy that I have is to pepper, rosemary, oregano, tomatoes, garlic etc.
Ie. all the spices that you can find in your typical hams, sausages but also dishes that you order in a restaurant. So this means that I would have to cook the meat myself and I find it rather annoying. On top of that I simply don't like the taste of meat - so it's not a very good incentive.

But I also allergic to meat per se - with antibodies particularly to beef, pork and fish (however these antibodies are not considered a meaningful diagnostic tool but this was enough for me to confirm my suspicions).
After ingesting meat and especially gelatinous parts (collagen) my joints quickly got on fire. I am even allergic to capsules that the supplements are enclosed in if they are made of gelatin. I had to buy myself vegan capsules and use them instead of these gelatin ones - which was extremely annoying. And for a long time I thought that I was allergic to the very supplement I used but no - only to a capsule that was made of gelatin.
Weird but true.

It is such a repeatable pattern that there can be no mistake - I challenged myself over and over again.
Sidenote: after ingesting the above-mentioned spices (esp. pepper and garlic) the feeling is as if my left arm was chopped off, paralysed, numb, etc. It doesn't feel like a heart attack because only arm and not the chest is affected. But I can see different and distinct patternst between different allergens or irritants (as they should be perhaps called in case of MCAS).

What I have must actually be MCAS of some kind but I can't find a good doctor to diagnose and treat it and now things are about to get changed (at least it looks like it).
The whole problem revolves around my gut and my gut lining being completely inflamed and having small abscesses. These apparently must have healed somehow (it took 4 years to heal) and I am able to at least ingest cheese and eggs, though with some symptoms appearing when ingested in too high amounts.

So, basically eggs are my staple food and they do contain a lot of protein and all of the necessary aminoacids.

Having said that, I know too well that meat has healing properties and it's hard to find a substitute that matches its effectiveness.

Meat has many different components, each of which may specifically help you:
- iron - so I take the best iron chelate there is
- creatine - so I take creatine
- omega-3 - if you don't take supplemental omega-3 it may be your only source
- carnosine - so I used to take beta-alanine, now I basically don't and that is a mistake
- carnitine - if you don't make your own (you have a genetic defect) this is your only source of carnitine, I take it on and off
- proteins and collagens - this is a vast area to talk about.
Firstly, if you want to supplement aminoacids instead of supplementing protein or eating meat (and I was allergic to all possible supplements, including pea protein - now I am not and I can eat cheese, eggs and even beans - my recent discovery) it is very difficult to find a proper mix that would fit all your needs and have all the required aminoacids. When I found the right mix there was arginine in it and this one gave me migraine headaches. And so on, and so forth... there was always something wrong. And don't forget to take taurine and carnosine if you really want to take all possible aminoacids that are present in meat.

Secondly, dipeptides from meat/collagens (they appear during digestion) may make you heal faster than single aminoacids from supplements. There are studies that confirm that.

Summing up, meat is good when you want to heal fast and don't know how to supplement properly (which is difficult as you may see) but it's not like people can't live without meat. The whole Indian population lives on beans and they are doing (quite) fine. Of course, a vegan diet and trying to get out of CFS is a whole different story. It may be quite hard, contrary to what different people may say.,