The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Prostate Pain and Methyl Cycle

Discussion in 'Pain and Inflammation' started by Soccermanjb, Oct 16, 2014.

  1. Soccermanjb

    Soccermanjb

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    I'm a 27 year old male and have had CFS for over 3 years. Any and every time I've barely started up my methyl cycle I get increased urination, severe prostate pain, and increased leg pain and tightness. I would classify myself as severe CFS.

    Anyone else have prostate symptoms like this?

    Even if I add in extra oral potassium the symptoms don't let up until I stop protocol. And I even start my supplements really low and slow and it still happens in a few days.

    Could it just be detox symptoms or maybe my amino acids are so low my body just can't support the work it's trying to do? My PCP is currently treating me with amino acids through IV treatment. Hoping to see good progress with that bc I haven't seen it with anything else. And that was one thing Rich said would keep people from improving on his protocol, the fact that their amino acids were low. I would love to hear from someone regarding prostate pain. Thx
     
  2. halcyon

    halcyon Senior Member

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    You may find the blog of fellow forum member @Patrick* interesting. He has blogged pretty extensively about his issues with prostatitis lately.

    In his case it appears it might be caused by enteroviral infection of the prostate.
     
  3. Soccermanjb

    Soccermanjb

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    Thx so much @halcyon. I did go and check out his blog. I will continue to follow him. Isn't it interesting in my case that any time I start deto or methyl cycle my prostate symptoms flare? It's not a constant issue only when I start the methyl cycle up.

    Maybe it's must something I have to put up with to see improvements? From @Patrick* s blog he is able to still work. I am homebound. so maybe this isn't so big of an issue that I can't still improve and just put up with the symptoms and maybe they will fade with time or ay least maybe I could better tolerate them the healthier I become.
     
    Patrick* likes this.
  4. liverock

    liverock Senior Member

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    @Soccermanjb
    From your symptoms you probably have a low sodium/potassium ratio(low water retention), thats why you probably have trouble taking potassium. The body wants sea salt, to balance up the ratio which is common in CFS and exhausted adrenals. A low sodium/potassium ratio is more associated with a prostate bacterial infection (as opposed to a viral infection), which can often be helped by antibiotics.
    A low sodium/potassium ratio in fact can be a common factor in bacterial infections in a lot of different parts of the body.
     
  5. Soccermanjb

    Soccermanjb

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    Yeah that's part of my struggle. I can't get water potassium and sodium balanced. My body only tolerates 1 gram of salt a day. If I do more then my throat tightens up and blood pressure jumps up. I think my gut has gotten so bad off and that's why my doc wants to heal my gut from the inside out with amino acid IVs.

    I'm on fludrocortisone and it helps some. Also getting IVs twice a week which helps more but I still can't stand for long at all... I've tried to get right balance for 2 years and can't...

    So I'm really hoping amino acid IVs will help. Rich van k talks about being low in amino acids can keep us CFS people down. I've lost 50lbs since being sick and can't put any on. Muscles are straight flab. My doc says it looks like I'm starving...

    I've been stuck for so long that after reading rich van k say what he said about amino acids it actually made sense. Here's the link. It's half way down the page.
    http://forums.phoenixrising.me/inde...ks-simplified-methylation-protocol-poll.3579/
     
    Last edited: Oct 16, 2014
  6. Soccermanjb

    Soccermanjb

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    _20140706_202639.JPG
    @liverock are you saying my potassium is to high or sodium? I've also read online that high sodium low potassium ratio can lead to prostate inflammation which I assume happens every time I try to start my methyl cycle up too fast I probably get low in potassium which leads to high sodium and prostate inflammation. Thoughts?

    I've also read some of your other posts and you seem pretty knowledgeable on SNPs... I was wondering if you could give me a few tips on mine?:rolleyes: maybe what form of b12 and folate I should take etc...

    PS... On a side note I have a cold right now... Only get sick once a year with my CFS and when I have drainage like I do now and I can feel it coating my intestines and throat my smells and sensitivities aren't as bad... Can never figure out why it does that... Even when I go to in-laws house I always have drainage and my digestion moves better... Makes me prefer a cold... I can even leave my legs down for longer with out having to put them up...

    This is a similar experience to what I was reading @determined saying... "
    For example, in the midst of severe chemical sensitivity over YEARS, it would very suddenly disappear for a day or so when I had a bacterial infection like strep. I think it must have been a sudden, massive shift in my immune system."
     
    Last edited: Oct 17, 2014
  7. liverock

    liverock Senior Member

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    @ Soccermanjb

    I'll come back to you tomorrow Bit fatigued at the moment.
     
    Last edited: Oct 17, 2014
  8. liverock

    liverock Senior Member

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    @Soccermanjb

    It looks like most of your problems are coming from your gut.
    A bacteria infested gut could raise histamine levels, especially if you already have high histamine neurotransmitters as well.

    High histamine will cause adrenal burnout eventually, which is what you have( ie low sodium/potassium ratio) and resultant CFS.

    The treatment for high histamine is Methionine and Inositol which breaks it down, not folate and B12. Trying the methylation treatment on its own will only make things worse, until you get the histamine lowered and under control.

    http://uk.iherb.com/Now-Foods-L-Methionine-500-mg-100-Capsules/706#p=1&oos=1&disc=0&lc=en-US&w=l methionine&rc=525&sr=null&ic=1

    http://uk.iherb.com/Jarrow-Formulas...sc=0&lc=en-US&w=inositol&rc=1123&sr=null&ic=1

    The lowered adrenals usually mean you also have leaky gut and I would suggest following the 4R Gut Rebuilding Programme, which includes a stool test, preferably under the supervision of a doctor.

    http://forums.phoenixrising.me/index.php?threads/the-4r-gut-rebuilding-program-summary.25761/

    Once you start getting histamine under control you can start a low dose methyl protocol.

    @Kimsie and @Critterina have personal experience of treating high histamine and they may be able to give you some more insight and recommendations.

    http://forums.phoenixrising.me/inde...n-we-keep-our-methionine-from-draining.26291/

    If you have trouble raising your sodium levels with salt ask your doctor about taking Glycerised Root licorice. If you keep going on with an unbalanced low sodium/potassium ratio it can damage your kidneys,liver and heart.

    Those with a low sodium/potassium ratio have a bacterial prostate infection, not a viral infection (according to the Wolf Institute) which means it can be treated with antibiotics.

    .

    .
     
    Last edited: Oct 19, 2014
  9. Soccermanjb

    Soccermanjb

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    Thank you so much @liverock ! You really hit the nail on the head! You've shared new hopeful information with me! I do have severe gut issues and real bad sensitivities like allergies and histamine issues that would explain why every time I start b12 and folic acid forms things get worse with histamines.

    Which one should I start on first? Methionine or inositol? Will l methionine bother me if I'm sensitive to sulfur? I read on forum that it was bothering some people but they were taking tmg too. I also ordered a different one than you recommended that didn't have b6 bc of my CBS mutation I gotta stay away from b6 but I also read methionine decreases it which could be good for me.
     
    Last edited: Oct 18, 2014
  10. Hip

    Hip Senior Member

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    It's interesting that higher blood levels of B12, which is part of the methylation regimen, are associated with increased risk of prostate cancer, with one study finding a 3 fold increase in risk.
     
    Last edited: Oct 18, 2014
  11. Soccermanjb

    Soccermanjb

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    @liverock does methionine raise SAMe? Bc I had a bad reaction to it to where it raised my histamines too. I'm really confused now...:(

    I just want the histamines to go away. I've reacted badly to tmg and SAMe. Will methionine increase my methyl cycle? Now I'm reading that b6 is helping people bc they must be deficient and is helping their histamines when they were struggling with methionine... I think I might try some b6...

    I don't know what to do... I feel like such an enigma... I am highly sensitive to sulfur so I'm not sure how I would respond to methionine... I may still try inositol tho. Does inositol have sulfur in it?
    http://forums.phoenixrising.me/index.php?threads/urgent-l-meth-raising-histamine.23777/page-2
     
    Last edited: Oct 18, 2014
  12. JalapenoLuv

    JalapenoLuv

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    unknown
    Yes. Mine is from Epstein barr virus infecting the prostate. Patients with EBV have higher prostate cancer rates.

    There isn't a known cure yet for EBV though researchers have been testing engineered viruses that cut out the viral DNA.

    Ibuprofen was effective for pain control.
     
  13. liverock

    liverock Senior Member

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    @Soccermanjb
    If your having bad reactions to SAMe then you will also have the similar reactions to methionine.
    This means the gut is not generating extra histamine and you should not take any methyl donors.

    The only other thing I know which could be at the root of your problems is Small Intestinal Bacterial Overgrowth(SIBO). This is more common than is thought and especially with SHMT++ mutations.

    What sort of treatment have you had for your gut problems, has anybody tested for SIBO, its a breath test over about 3 hours.

    What sort of gut/bowel problems do you have, color of stools, frequency of bowel movements,IBS,etc?

    What sort of treatment have you had for gut problems?

    SIBO can cause a load of problems because it leads to Leaky Gut Syndrome(LGS), whereby this bacteria generated in the gut can spread throughout the body, which causes increased immune activation, lowering of adrenal function,as well as poor mitochondrial function and hormonal problems, among other symptoms.

    Taking MB12 and Methylfolate could have interacted with this bacteria and caused an increase in its circulation via the leaky gut wall, some of which found its way into your prostate causing your bacterial infection.

    SIBO also causes major malabsorption of nutrients including Vitamin B12, major minerals and amino acids, which is why you have lost so much weight. SIBO bacteria can also generate their own folic acid, which totally disrupts disrupts the methylation cycle.:(









    IMO the way forward is to get a gut programme started under a local Functional Medicine doctor or Naturopath, as outlined in the 4R Gut Rebuilding programme.

    http://forums.phoenixrising.me/index.php?threads/the-4r-gut-rebuilding-program-summary.25761/
     
    Last edited: Oct 19, 2014
  14. Soccermanjb

    Soccermanjb

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    Last edited: Oct 25, 2014
  15. liverock

    liverock Senior Member

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    If you have been treated for SIBO for 3 years you should have had several courses of antibiotics by now IMO. Probiotics alone is for mild cases and if they dont work then antibiotics are normally used. Flagyl is an antibiotic but the one most used is Rifaximin.
    http://en.wikipedia.org/wiki/Small_intestinal_bacterial_overgrowth

    Coeliac and Pancreatitis should be ruled out before treating SIBO.
    http://en.wikipedia.org/wiki/Coeliac_disease

    SIBO and OI can sometimes go hand in hand especially with a herpes infection such as EBV.
    http://www.cortjohnson.org/blog/2014/06/06/gut-brain-esthers-chronic-fatigue-syndrome-xifaxin-story/

    If you havent already been tested for herpes viruses like EBV get tested.

    One theory about the cause of SIBO in CFS says low BP can cause low blood flow to stomach, which causes stomach cells lining the gut to die off and you get LGS and SIBO. Glutamine(if you can stand it) and zinc carnosine help rebuild cells.

    Try 6 enteric coated peppermint oil caps/day, works for some people with SIBO.
    http://www.ncbi.nlm.nih.gov/pubmed/12410625
     
  16. Soccermanjb

    Soccermanjb

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    Thanks so much @liverock ! I'm getting tested for SIBO this week Lord willing. Planning to have my wife pick up the SIBO testing kit from my doc on Monday. Wouldn't it make since that if I did have SIB that it could be why I bloat so severely on a small dose of probiotic and it never gets better?

    http://www.cortjohnson.org/blog/201...al-bacterial-overgrowth-leaky-gut-connection/

    This article got my hopes up...
    I'm praying that I do have SIBO but doing my best to not get my hopes up... Hard not to. It just seems like there had to be some logical reason why my gut keeps holding me back and can never improve.

    I eat a lot of food each day to the point I can feel it sitting in my throat but I never really feel full or satisfied...
     
    Last edited: Oct 26, 2014
  17. liverock

    liverock Senior Member

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  18. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Prostate pain can also be a symptom of Lyme disease or Lyme 'like' disease (Bartonella) in males.

    It tends to come on in cycles, so isn't chronic.

    This makes diagnosis difficult, and the tendency for the physician not to believe the patient.
     
  19. Soccermanjb

    Soccermanjb

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    @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?
     
    Last edited: Nov 7, 2014
  20. halcyon

    halcyon Senior Member

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