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Prostate Pain and Methyl Cycle

halcyon

Senior Member
Messages
2,482
Are you in the US? Your symptoms sound like they could be consistent with enterovirus. Prostatitis that isn't relieved by antibiotics, functional dyspepsia, and IBS are all thought to be associated with persistent enterovirus infection.
 
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61
Are you in the US? Your symptoms sound like they could be consistent with enterovirus. Prostatitis that isn't relieved by antibiotics, functional dyspepsia, and IBS are all thought to be associated with persistent enterovirus infection.
Yes I'm in North Carolina. How can I test for them? what viruses are they? @halcyon
 

halcyon

Senior Member
Messages
2,482
The two types most commonly associated with ME/CFS are coxsackie B and echovirus. Each of these has multiple subtypes. There are a couple different ways to test for them but sadly none of them are 100% perfect. PCR can pick them up regardless of serotype, but seems to have really high false negative rates with persistent infections. You can also have stomach tissue (obtained via upper endoscopy biopsy) tested for the presence of viral protein. Perhaps you've already had this procedure done if you've been having stomach issues for a while and the pathologist should still have the tissue samples stored. The easiest option is the blood test for neutralizing antibodies. This method can only test for 11 out of the over 70 known enterovirus, but those 11 are the most common ones. If you have access to a LabCorp you can ask your doctor to order the following test codes:
  • 816869 - Coxsackie B Virus Abs
  • 823361 - Echovirus (Frozen) Serum Ab Panel
The lab technician will need to be instructed to send the samples to the reference lab.
 
Messages
61
The two types most commonly associated with ME/CFS are coxsackie B and echovirus. Each of these has multiple subtypes. There are a couple different ways to test for them but sadly none of them are 100% perfect. PCR can pick them up regardless of serotype, but seems to have really high false negative rates with persistent infections. You can also have stomach tissue (obtained via upper endoscopy biopsy) tested for the presence of viral protein. Perhaps you've already had this procedure done if you've been having stomach issues for a while and the pathologist should still have the tissue samples stored. The easiest option is the blood test for neutralizing antibodies. This method can only test for 11 out of the over 70 known enterovirus, but those 11 are the most common ones. If you have access to a LabCorp you can ask your doctor to order the following test codes:
  • 816869 - Coxsackie B Virus Abs
  • 823361 - Echovirus (Frozen) Serum Ab Panel
The lab technician will need to be instructed to send the samples to the reference lab.
Thank you so much for your help and advice @halcyon ! Is this something that my home health nurse could draw out of my pic line? Or would I need to go to lab corp and get it done? Couldn't they use my pic line too? We have a lab corp here in my city.

Is there any kind of treatment for it?
 

halcyon

Senior Member
Messages
2,482
You'd most likely need to have it drawn by LabCorp. The samples need to be frozen right away.

There aren't any targeted antivirals for enterovirus available. Equilibrant is probably the best option at this point.
 
Messages
61
You'd most likely need to have it drawn by LabCorp. The samples need to be frozen right away.

There aren't any targeted antivirals for enterovirus available. Equilibrant is probably the best option at this point.

So there isn't much hope for improvement if someone has them? Surely there has to be some way to improve? Methyl cycle doesn't help?
 
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61
Yes, I appear to be infected with echovirus type 30.
How long ago did you find out and have you had any improvements? Was your meningitis?
My older bro had an emergency issue with meningitis then the doctors later called it ensepholitus. Was in hospital for like 3 weeks and recovered at home for like 3-4 months but lost sense of smell and taste but eventually regained taste. Had to be on seizure meds for a few years afterwards too. @halcyon
 
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halcyon

Senior Member
Messages
2,482
I had a positive finding of enterovirus protein in my stomach biopsy samples almost 5 months after becoming ill. A few months later I had a positive finding on the serum antibody test. I was very ill when acute but it didn't appear to be meningitis. I took Equilibrant for a little over a week and had some improvements, but overall it made me much worse and I've had to stop taking it until I recover a bit. I'll be starting it up again at a much lower dose.

It's possible to have both, it's called meningoencephalitis. If it's aseptic a common cause is enterovirus, echovirus especially.
 

caledonia

Senior Member
With the SHMT mutation, Yasko suggests folinic acid and also lactoferrin as well as some of her proprietary RNA's. You would supplement with those while working on the gut. (I'm not sure about her RNAs, some people like them, some don't, plus they're very expensive.)

I noticed that you haven't mentioned magnesium supplementation. Magnesium works in conjunction with potassium, and if you're not taking that, maybe that's why you can't get a balance. The sodium may raise BP if you have the ACE deletion (on Sterling's SNP test at MTHFRsupport.com).

If you have weak adrenals all your electrolytes will be leaking out like crazy, and you'll need to replace them several times a day. Mixing powders into water and drinking them works well for me.

You can use the SNPs Interpretation Guide linked in my signature below to interpret your SNPs as run through Genetic Genie.

Just briefly, you have both MTHFRs, the B12 Double Whammy and COMT. The CBS/BHMT combo actually doesn't look that bad, but you're reporting issues with sulfur.

ps. I was unable to get complete healing of my gut until I started methylation supplements. I'm going extremely low and slow and it still worked. The Bs your doc is putting in the IV bag might be a good thing.
 
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61
With the SHMT mutation, Yasko suggests folinic acid and also lactoferrin as well as some of her proprietary RNA's. You would supplement with those while working on the gut. (I'm not sure about her RNAs, some people like them, some don't, plus they're very expensive.)

I noticed that you haven't mentioned magnesium supplementation. Magnesium works in conjunction with potassium, and if you're not taking that, maybe that's why you can't get a balance. The sodium may raise BP if you have the ACE deletion (on Sterling's SNP test at MTHFRsupport.com).

If you have weak adrenals all your electrolytes will be leaking out like crazy, and you'll need to replace them several times a day. Mixing powders into water and drinking them works well for me.

You can use the SNPs Interpretation Guide linked in my signature below to interpret your SNPs as run through Genetic Genie.

Just briefly, you have both MTHFRs, the B12 Double Whammy and COMT. The CBS/BHMT combo actually doesn't look that bad, but you're reporting issues with sulfur.

ps. I was unable to get complete healing of my gut until I started methylation supplements. I'm going extremely low and slow and it still worked. The Bs your doc is putting in the IV bag might be a good thing.

I tried lactoferrin but my stomach didn't like it very much. Not sure if it was bc of whey in it or what. I tried folinic acid but my throat tightened immediately 3 days in a row. I think it was a filler in the supplement so I stopped. I have recently ordered a different brand that's in a capsule instead of a tablet. Hoping to have better results. Haven't tried it yet.

As far as magnesium goes I am taking 2,000mg a day. It helped my sleep quite a bit better. I was also defecient.

Interesting about your gut improving after starting methylation. I've wondered that for my own self as well.
 
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61
@LaurieL would you mind giving me a good starting point for shmt? I'm +/+. I've read some of your posts and you seem to know a lot about shmt. My mutations are on the first page. Thx in advance. Also I'm very sensitive to methyl donors and don't know why. I get low potassium symptoms quickly.

@Freddd would you mind checking out my gene mutations and give me your two cents? I've been reading a lot of your advice and comments as well. I'm extremely sensitive to even small doses of methyl donors. My doc is trying to get me on coq10 ATM and I can't get past 20mg without low potassium symptoms flaring and then feeling like I can't catch up.
 
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caledonia

Senior Member
Try reading my document Start Low and Go Slow and also Roadblocks to Successful Methylation, linked in my signature below. You might have to do CBS first before you can tolerate methyl supps, and/or go extremely low and slow. The COMT mutations will also make you sensitive to methyl supps.

As an example of extremely low and slow, I've been on 16mcg of methylcobalamin and 4 mcg of adenosyl (divided into 4 doses throughout the day) and then 1/64 of one Holistic Health All in One multi, two days a week. That contains methylfolate, folinic and a bunch of other co-factors. A normal dose of the All in One is 4 capsules per day.

I've completed my gut healing, detoxed mercury, cured my autoimmune thyroiditis, improved adrenals and am currently detoxing lead, all on this tiny dose, over the course of about a year. I'm just now getting to where I can increase the B12 a bit.

I had to do CBS treatment before I could tolerate any B12 - I was having trouble with even 1mcg of methylcobalamin.

ps. Freddd doesn't know anything about SNPs.
 
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Wow @caledonia! You sound a lot like me with being sensitive... Have you seen an improvement in energy? Did your gut just get better over time on just those supplements? It's so odd... My sulfite levels are extremely low which is good but doesn't explain sulfur sensitivities... And why molybdenum gives me relief.'s so odd...

What about histamines? Do you struggle with them still?

Were you doing those b12s every day or twice a week too? Are you taking any methyl folate? I think I will try the multi vitamin like you. What should I take? Folinic for shmt? What about b12?

I've always felt that I won't see much improvement if I can't do big doses but I'm seeing that's not true with you. You are giving me hope.

Also what did you mean by this statement, "The sodium may raise BP if you have the ACE deletion (on Sterling's SNP test at MTHFRsupport.com)." I have to be very careful how much sodium I take bc my body is so sensitive to it... If I take more than 1 gram a day orally my my throat starts to tighten up and my blood pressure increases too much almost like my body is intolerant to it.
 
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caledonia

Senior Member
Wow @caledonia! You sound a lot like me with being sensitive... Have you seen an improvement in energy? Did your gut just get better over time on just those supplements? It's so odd... My sulfite levels are extremely low which is good but doesn't explain sulfur sensitivities... And why molybdenum gives me relief.'s so odd...

I've had about a 5% improvement in energy. I would expect more after my metals are all out, and I can raise my supps higher. I worked with my naturopath for many years on my gut prior to doing methylation. I ended up doing all the 4R steps, but could never get off anti-fungal herbs without a recurrence of candida. Methylation was the final piece. I don't have SHMT or ACAT.

I think the explanation for your CBS situation is that it doesn't appear until you take methyl supps. Yasko has discussed this. If moly helps, it sounds very likely that you have a CBS problem. Ammonia could be involved too.

What about histamines? Do you struggle with them still?
I don't think I have histamine issues.

Were you doing those b12s every day or twice a week too? Are you taking any methyl folate? I think I will try the multi vitamin like you.
I'm taking the B12 every day. The All In One multi has methylfolate. I'm not taking anything extra beyond that. In fact, I need to be careful how many folate vegetables I get, or I can get unpleasant metal dump symptoms. Avocado and asparagus are biggies.

What should I take? Folinic for shmt? What about b12?
If I had a double SHMT mutation, and all the trouble you've had with the gut, I would go back to the original Yasko and Heartfixer documents and try everything they say to do for SHMT. Some of those are methyl supps, so if you can't even tolerate very small amounts, you may need to do CBS treatment first.

I've always felt that I won't see much improvement if I can't do big doses but I'm seeing that's not true with you. You are giving me hope.
That's what I keep trying to tell people. I'm not sure if it's sinking in.

Also what did you mean by this statement, "The sodium may raise BP if you have the ACE deletion (on Sterling's SNP test at MTHFRsupport.com)." I have to be very careful how much sodium I take bc my body is so sensitive to it... If I take more than 1 gram a day orally my my throat starts to tighten up and my blood pressure increases too much almost like my body is intolerant to it.

There may be a genetic reason you're having trouble with salt.
 
Messages
61
@caledonia I've tried her recommendations but run into issues with not being able to tolerate but really low weak probiotics. She did say however that you may need to have shmt supports in place to have better success with gut function. I'm planning to try and start taking some folinic acid.

My doc just recommended me try fecal transplant. I'm going to give it a try. I've read studies of good responses with CFS.

http://forums.phoenixrising.me/index.php?threads/fecal-transplant-study-58-70-response-rate.20430/

Seems like I can only take small amounts of probiotic and who knows how much of that makes it to the colon. Maybe a fecal transplant would actually help me.
 

liverock

Senior Member
Messages
748
Location
UK
@liverock .... Hydrogen breath test came back negative... Any advice on what avenue to take? Should I try methyl cycle? I've tested for h pylori and sibo and both were negative. I seem to have gut issues with sensitivities and intolerances but all tests come back normal or not that bad... But I have the SHMT +/+ mutation... Should I try supplementing with a little folinic acid to support SHMT gene? I know my gut is in bad shape but I don't know what to do now... I'm praying God will lead me in the right direction...
Should I try niacin or inositol? Or low dose folinic acid for SHMT mutation support?

First of all what foods do you eat.
What proportion of your diet contains flour based food.
Home cooked or supermarket ready to eat meals.
What ratio are fresh/processed.
How many of the following additives are in your diet:
  • MSG
  • Hydrolyzed vegetable protein
  • Autolyzed yeast
  • Hydrolyzed yeast
  • Yeast extract
  • Soy extract
  • Protein isolate
  • Natural flavor, which often contains synthetic free glutamate

What are your serum B12 and Folic acid levels?