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Huge improvement in two hours

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Strange, I found a fair bit of stuff.

Cystinosis is the easiest way to find high blood cystine. More severe forms can cause kidney damage and that gets most of the press. True Cystinosis and excessive urination seem to be fairly well established stuff, the Boots website references it.

It did take me a while to plough through stuff - when I tried Cystine loads of Cysteine stuff came up.
Try looking for Cystinosis and Selenium. The urination causes the Selenium deficiency hence that's more likely to cause 'a hit'.

Hope that helps. :)

I just did an internet search for cystinosis and had a quick look at a few hits, which indicate that it is a very rare heridary disease, e.g. here.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
I just did an internet search for cystinosis and had a quick look at a few hits, which indicate that it is a very rare heridary disease, e.g. here.
Agreed MeSci, the 'true' disease is considered uncommon and is genetic. From the limited amount I understand, any situation creating very high cystine would produce similar symptoms without the genetic disease. I have a long way to go before I understand this the way I do the endocrine and Mito stuff. I can only give so much info at this point - I am just getting started.

My thinking is:
  1. Selenium deficiency is also considered very rare but is sufficiently common in ME that MyHill routinely recommends supplementation as part of her protocol. My problems with Glutathione and T3 were definitely upstream of that.
  2. In turn Cystine lowers Selenium via Polyuria, but is not routinely test for. I found indications that high oxidative stress is implicated in cystine generation.
This seems like a very plausible thing to look at, and not too expensive - hence the suggestion. I found it as a result of a comprehensive amino acid panel, I wasn't actually looking for it. I don't view it as a 'dead cert' more as a potential 'easy win'.

My feeling is that this may be analgous to common sub-clinical thyroid and adrenal problems in ME patients and it does create a lot of ME like symptoms that get little discussion.

Either way, I wish you success sorting out your polyuria, when I manage to lower mine the improvement in my cognition is stunning.

Leo.
 

xks201

Senior Member
Messages
740
If you have constant fevers you need an infectious disease workup for parasites viruses and bacteria.....that is not normal imo.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Agreed MeSci, the 'true' disease is considered uncommon and is genetic. From the limited amount I understand, any situation creating very high cystine would produce similar symptoms without the genetic disease. I have a long way to go before I understand this the way I do the endocrine and Mito stuff. I can only give so much info at this point - I am just getting started.

My thinking is:
  1. Selenium deficiency is also considered very rare but is sufficiently common in ME that MyHill routinely recommends supplementation as part of her protocol. My problems with Glutathione and T3 were definitely upstream of that.
  2. In turn Cystine lowers Selenium via Polyuria, but is not routinely test for. I found indications that high oxidative stress is implicated in cystine generation.
This seems like a very plausible thing to look at, and not too expensive - hence the suggestion. I found it as a result of a comprehensive amino acid panel, I wasn't actually looking for it. I don't view it as a 'dead cert' more as a potential 'easy win'.

My feeling is that this may be analgous to common sub-clinical thyroid and adrenal problems in ME patients and it does create a lot of ME like symptoms that get little discussion.

Either way, I wish you success sorting out your polyuria, when I manage to lower mine the improvement in my cognition is stunning.

Leo.

Solute/osmotic diuresis often involves depletion of multiple nutrients. This is almost-certainly why I suffered dental damage and a fracture after my first attack of severe hyponatraemia - I was losing other minerals as well as sodium. Since supplementing bone minerals my teeth and bones have felt much stronger (subjective, I know). I started supplementing after my second attack (3 years later) which was taken seriously, unlike the first which was dismissed by a GP over the phone as a panic attack (of which I had no history) and I was left alone in a near-life-threatening condition. If the mineral loss had been picked up the first time I would not have suffered the dental damage or the fracture. Even after the second attack it was left to me to research what was happening so as to prevent recurrence.

If you find the source of your info on cystinosis, please post the references and/or links here. People here are doing internet research all the time, with varying levels of expertise, but I have found nothing in PR about people with ME/CFS having high cystine levels, although I have found posts stating the opposite (low levels) and one recommending supplementing it!

Who did your amino acid testing?
 

Leopardtail

Senior Member
Messages
1,151
Location
England
Solute/osmotic diuresis often involves depletion of multiple nutrients. This is almost-certainly why I suffered dental damage and a fracture after my first attack of severe hyponatraemia - I was losing other minerals as well as sodium. Since supplementing bone minerals my teeth and bones have felt much stronger (subjective, I know). I started supplementing after my second attack (3 years later) which was taken seriously, unlike the first which was dismissed by a GP over the phone as a panic attack (of which I had no history) and I was left alone in a near-life-threatening condition. If the mineral loss had been picked up the first time I would not have suffered the dental damage or the fracture. Even after the second attack it was left to me to research what was happening so as to prevent recurrence.

If you find the source of your info on cystinosis, please post the references and/or links here. People here are doing internet research all the time, with varying levels of expertise, but I have found nothing in PR about people with ME/CFS having high cystine levels, although I have found posts stating the opposite (low levels) and one recommending supplementing it!

Who did your amino acid testing?
If you are after a smoking gun, I did not find one. As I said earlier this is a possible easy win, but no dead cert.

My testing was done by Genova UK (fasting amino acid profile).

Was that post recommending supplementation for Cystine or Cysteine? I found due to to the tiny difference in spelling quite a few articles confuse the two when I checked the enzymes involved. I have seen quite a few articles referring to Cyst(e)ine where the authors considered the two be be synonymous (a common error). If it was Cystine (not Cysteine) supplementation please post a link, I would love to read it.

My focus was on the effects of high Cystine and on urination to confirm the accuracy of information seen in articles from more reliable sources. I was not checking correlation with CFS with any effort since I knew my situation. I found little in the way of articles and some issues. One example being a meta-anlysis [Droge] of multiple diseases reporting high Glutamate in CFS - where Glutamate results have been quite variable.

Should I come across anything relevant, I will let you know, please do the same. :)
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
If you are after a smoking gun, I did not find one. As I said earlier this is a possible easy win, but no dead cert.

My testing was done by Genova UK (fasting amino acid profile).

Was that post recommending supplementation for Cystine or Cysteine? I found due to to the tiny difference in spelling quite a few articles confuse the two when I checked the enzymes involved. I have seen quite a few articles referring to Cyst(e)ine where the authors considered the two be be synonymous (a common error). If it was Cystine (not Cysteine) supplementation please post a link, I would love to read it.

My focus was on the effects of high Cystine and on urination to confirm the accuracy of information seen in articles from more reliable sources. I was not checking correlation with CFS with any effort since I knew my situation. I found little in the way of articles and some issues. One example being a meta-anlysis [Droge] of multiple diseases reporting high Glutamate in CFS - where Glutamate results have been quite variable.

Should I come across anything relevant, I will let you know, please do the same. :)

As a medical scientist I am well aware that cystine and cysteine are different compounds.

Here is the post. You can find others referring to low cystine from the basic PR search box in the top right. I cannot vouch for the accuracy of these posts, of course, and don't have time to read them.

Polyuria appears to be common in ME. The dilute type usually responds well to desmopressin, as it is almost-certainly due to a lack of vasopressin, which has been found in ME/CFS.

The solute/osmotic type of polyuria has a much wider range of possible causes, as this paper explains. (I have the full text but can't find a link now.)

Why not look at the PR threads on polyuria?
 

Leopardtail

Senior Member
Messages
1,151
Location
England
As a medical scientist I am well aware that cystine and cysteine are different compounds.
Assumed you would be, was very surprised many researchers didn't though, hence the warning as a time saver.

Here is the post. You can find others referring to low cystine from the basic PR search box in the top right. I cannot vouch for the accuracy of these posts, of course, and don't have time to read them.

Polyuria appears to be common in ME. The dilute type usually responds well to desmopressin, as it is almost-certainly due to a lack of vasopressin, which has been found in ME/CFS.

The solute/osmotic type of polyuria has a much wider range of possible causes, as this paper explains. (I have the full text but can't find a link now.)

Why not look at the PR threads on polyuria?
Already found my personal issue hence no need for further investigation as yet.

Regards the endocrine causes, well aware of them given my background, did a comprehensive pubmed search some time ago. My personal pattern is raised trophic hormones with low 'useful' hormones across all three glands hence with fairly balanced electrolytes hence AVP alone unlikely for me personally.

The solute/osmotic angle is on my to do list, so thanks for the paper. :)
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Assumed you would be, was very surprised many researchers didn't though, hence the warning as a time saver.


Already found my personal issue hence no need for further investigation as yet.

Regards the endocrine causes, well aware of them given my background, did a comprehensive pubmed search some time ago. My personal pattern is raised trophic hormones with low 'useful' hormones across all three glands hence with fairly balanced electrolytes hence AVP alone unlikely for me personally.

The solute/osmotic angle is on my to do list, so thanks for the paper. :)

I may try to upload the full text if I get the time. Maybe best to do it in a polyuria thread as this thread needs to get back to its core subject, I think. I'll let you know if I get round to it and succeed.
 

JAH

Senior Member
Messages
497
Location
Northern California
I took allergy research groups russian choice rhamnosus lysate powder.

No I don't normally get colds or sick. I took six capsules twice.

This morning I have woken up still feeling better than I normally would. I have had similar, yet nowhere near as strong a reaction with probiotics before but it did not last.

However it more and more things are pointing towards the gut even though I don't have any gut symptoms.

The product is apparently the broken up shells of the rhamnosus powder and acts on the immune system and the bacteria at least when alive, kills streptococcus which I have an overgrowth of.

The websites that sell the product have an interesting description about how it works if someone more computer able can post it here.
Hi knackers, a friend of mine has recommended my taking Del Immune, so I have been rereading this thread. One thing that caught my eye was your description of "broken up shells of rhamnous powder". Do you know what the powder is made from, shells of what? Have a severe shellfish allergy, so I can't take certain supplements,

Thanks, I know you stopped taking the powder, hope you are feeling ok,

JAH
 

Adlyfrost

Senior Member
Messages
251
Location
NJ
Ok... Day three taking rhamnosus lysate capsules, and I actually feel worse. Not good at all.

Things that have markedly worsened today:
- Brain fog (as bad as it gets)
- Fatigue and shortness of breath
- Headaches and visual noise (light sensitivity, floaters)
- Sleep (slept quite poorly last night, worse than the night before; feeling wrecked today)
- Stomach cramps, IBS symptoms

I would appreciate it if anyone could let me know what this means.

Again, I keep my reservations that maybe the exposure to the frigid cold over the last few days may have messed me up too, and may be developing a major cold. Not sure, but can't discard it.

For the record, I did experience an uptick in alertness and thinking on the first day taking this supplement (as listed in this post). Then half way through the second day things started to go downhill.


Hip, I'm not as versed as many of you guys in these medical terms. I have been told in the past about the relationship of cytokines and CFS symptoms, but most of it escapes my understanding.

If rhamnosus lysate estimulates Th1 cytokines, but I feel worse taking it, what does it mean? What should I look into? What tests should I ask my doctor to take in regards to my gut flora?


Hi Knackers323: are you still taking the supplement? Have you noticed any changes, any improvement or worsening of symptoms and general condition?


PS: brain-fog so bad today that it took me many passes to actually type and edit this note.

@Antares in NYC : Sometimes I feel worse when I overstimulate Th1. This is not necessarily bad- just means I need to back down a bit to get Th1 and Th2 in balance.

To do this I just reduce Th1 supplements (reduce dosage not illuminate- or I will just take it on the weekends) or, take some balancing Th2 supplements. For example, if I take a lot of licorice, garlic and olive leaf extract (Th1 stimulating) and feel flu ish I might drink a cup of green tea (th2 stimulating) and the next day go lighter on the Th1 stuff.

Here are two articles that may help understand more about th1 vs th2: http://www.drkaslow.com/html/immune_restoration.html and http://www.thepaleomom.com/2013/01/3254.html
 

Adlyfrost

Senior Member
Messages
251
Location
NJ
Lord, I'm feeling like my brain is being submerged in battery acid. I need to call my doctor tomorrow. I'm definitely falling into a major CFS crash, and fast.

Not sure which ME/CFS subgroup I belong to, but I'm thinking this supplement is not for me.

Edit: I just remembered that in the past I got similar reactions from certain supplements. Last year I got a similar reaction (although not as awful as today's) when I tried astragalus to boost immune function. I can sense a pattern.

Sometimes when I take too much Th1 stuff my flu symptoms come back too strong. Sometimes Th1 will activate autoimmunity too and make me crash or unable to heal. Posting this because I want people to consider that TH1 vs Th2 is not black and white. Healthy immune system has to be balanced. Yes, CFSers have malfunction with TH1 but increasing TH1 is not always the solution. It is not always that simple.
 

Adlyfrost

Senior Member
Messages
251
Location
NJ
If you have constant fevers you need an infectious disease workup for parasites viruses and bacteria.....that is not normal imo.

@xks201 : The problem with work up for viruses with patients w/ CFS/ME is that most of the time enteroviruses are impossible to detect in the bloodstream. Dr. Chia is one of the few doctors who biopsies his patients and find enteroviruses in the tissues and linings of the gut and GI.
 
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knackers323

Senior Member
Messages
1,625
I had completely forgotten about this thread.

Did anyone ever try the product?

What were the results?

I hope it helped someone