Bladder Pain and Methylation Protocol, RICKVAN you here?

Discussion in 'Fibromyalgia Main Forum' started by elliespad, Mar 26, 2007.

  1. elliespad

    elliespad Member

    So, I"m one of the guinea pigs starting the Methylation unblocking protocol that has been discussed recently. When I added in SAM-e, a sulphur donor, I am getting SCREAMING bladder pain. I just remembered that it does this when I have MSM, tons of garlic (and i do eat a LOT of garlic all the time), anything with EDTA in it. I have had EDTA Chelation and again had HORRIBLE kidney pain from it. If I eat/drink anything with EDTA (like Minute Maid Lemonade) or use hair dye with EDTA, my bladder screams. I'm guessing it is the SAM-e, donating sulfer, that's doing it. Has anyone else had this occur? Especially related to the Methylation unblocking protocol?
  2. richvank

    richvank New Member

    Hi, elliespad.

    I'm really sorry about the terrible bladder pain. Sounds as though you have good reason to suspect that the SAMe is the cause, so I'm hoping that you have stopped taking that.

    I don't know what your genetic variations are, but people who have a methylation cycle block and also have one or more SNPs that cause upregulation of their CBS (cystathionine beta synthase) enzyme can be sensitive to foods and supplements that contain sulfur.
    Another important SNP is the one that causes downregulation of the SUOX (sulfite oxidase) enzyme. Some PWCs have both.

    Some sulfur sensitivity problems can be corrected by supplementing with molybdenum. If you aren't already doing that, you might consider it. Molybdenum is a cofactor for SUOX and helps it do its job.

    I also don't know why the problem would show up in your bladder. I think it suggests that something is being excreted in your urine that is irritating to the wall of the bladder. It would be interesting to know what the pH of your urine is when you have that terrible pain.

    Well, as I wrote in my article on treatment, where I suggested this treatment approach, it is new and untested, and I don't know what fraction of the CFS population will find that it works for them. I hope you will continue to give it a try, but without the SAMe.


    LISALOO New Member

    I'm starting this protocal too! Sulfer can irritate your bladder. I have IC and when ever I go on any type of sulfer antibiotic I'm dying.

    I'll be starting Sam-E again, I don't remember it causing problems before. I will have to try.
  4. elliespad

    elliespad Member

    Couple thoughts. i have SIGNIFICANT bladder history , predating kindergarten even. SCREAMING bladder pain, even had urinary cytoscopy pre-k. A bit of interesting history: i have SIGNIFICANT pesticide exposure, know the names of most of the chemicals. PHOSPHATES are used in Pesticide making. Also, a VERY knoledgable doctor,(was Gifted Actually)is a neurologist, psychiatrist and pharmacist who served in Army and assigned to CHEMICAL WARFARE, knew of all 7 chemicals I was exposed to repeatedly, and he said some of them would cause vascular damage, and would like cause EXTREME pain in bladder, so I'm likely being re-exposed to the stored chemicals. The others are Organophosphates and Carbamates, dioxins and rat poison. (Aldrin, DDT, 2,4,5-T, Dursban, heptaclor, Malathione, and Rat poison) No wonder I'm such a pile of dog doo.

    And, I DO have ph strips , just a matter of finding them. Been a while since I've used them. Thanks all
  5. elliespad

    elliespad Member

    Can you tell me what kind of success you've had using Mannose? I;ve tried it for getting rid of infection and can't do it, and Ive taken a LOT. I know it's supposed to be better at prevention, rather than treatment.

    But, do you find it helpful for spasms? or IC pain? I have some and could take it if I thought it might help.
  6. elliespad

    elliespad Member

    Nope, I think you get the ribbon for the WORST bladder. Bladder pain really is HELL isn't it? I have a lot of history with infections, but that is just NORMAL pain and burning. NORMAL vs. abnormal. How to distinguish? Either way, it is HELL. Took more SAM-e today, so I expect to be visiting HELL again later today. Hope I'm wrong.
  7. elliespad

    elliespad Member

    Yeah, I'm a glutton for punishment. Had yeast issues YEARS ago, recurring yeast infections, bladder infections, SEVERE GERD, Ulcers. Cleared it up COMPLETELY using many good things, and remain on probiotics, and have no issues anymore, at all. (As far as I can tell)

    My bladder probems recur when I take a lot of sulphur in. So, that's why I'm guessing yesterdays pain was from the SAM-e, and detoxing. So, today I took the SAM-e again, wanted to see if I could reproduce the problem, or if it was a random occurrance. I took only 1 teaspoon of Lecithin and took 2 tabs of Molybdenum. I would hate to miss out on the benefits of the protocol because I cut out the Sam-e prematurely. I'm sure I will know soon if the pain is going to recur.
    [This Message was Edited on 04/12/2007]
  8. elliespad

    elliespad Member

    HA LOL . You're right dncnfngrs, we could PROBE it some more. On chit chat, of course.
  9. Elisa

    Elisa Member

    I am wondering if anyone with sulfur issues has asthma or any breathing problems.

    Rich was talking about SUOX - and how it effects the processing of sulfur in the body.

    As far as I understand quite a few CFS people have sulfur issues. Is that why some of us can't take whey protein?

    For me I have problems with garlic (breathing), Sam-e makes me cry/very emotional...

    Rich what's you take on this relative to your protocol. Is molybdenum the way around the SUOX issue?


  10. richvank

    richvank New Member

    Hi, Elisabeth.

    The sensitivity to sulfur-containing foods and supplements, including whey protein (when it isn't an allergy) seems to involve sulfite, which is a toxin at high enough levels. The problem can occur from making it too fast, as occurs in PWCs with a methylation cycle block and upregulating polymorphisms (SNPs) in their CBS (cystathionine beta synthase) enzyme. It can also be caused by not being able to convert it to sulfate fast enough, as in molybdenum deficiency or with a downregulating SNP in the sulfite oxidase (SUOX) enzyme.

    If the problem is low molybdenum, that can be taken care of by supplementing molybdenum. When doing this, it is a good idea to monitor the copper level, as in a urine essential elements test, because Mo is competitive with coppper.

    If the CBS upregulation or the SUOX downregulation SNPs are present, then Amy Yasko uses what she calls the ammonia support program as part of her treatment. This involves minimizing intake of sulfur-containing substances as well as decreasing protein intake somewhat. It also includes taking activated charcoal, yucca, and an ammonia support RNA formulation. Butyrate can also help. The reason for taking the ammonia binders is that excess ammonia generation is associated with the CBS upregulation, also, in addition to the excess sulfite and hydrogen sulfide generation.

    I would recommend Amy's book, "The Puzzle of Autism," which is sold through It's focused on autism, but I believe that most of it applies to CFS as well.

    Asthma can be associated with sulfite sensitivity. Some sulfite is produced when glutathione is mixed with water for nebulizing, and asthmatics don't always respond too well to nebulizing glutathione. They can develop bronchospasm from it, and need to use an inhaler to clear it.

  11. Elisa

    Elisa Member

    Your post was tremendously helpful. I am going to order "The Puzzle of Autism" today!

    Thanks again Rich!


  12. richvank

    richvank New Member

  13. richvank

    richvank New Member

  14. elliespad

    elliespad Member

    You are just a WEALTH of information. Thank you for all you are doing to help us. In my other methyl post, I told about my current UTI. When I am done treating this, I want to SLOWLY restart the Methyl supps again. Because I've been REALLY cold and sitting under a heated throw for a week or two, I decided to restart my Thyroid meds (half dose), and promptly had chest pain and palpitations, so took Tenormin today. Not a big deal, I deal with this crap all the time. Me thinks I will stay off the Thyroid still.

    Since I havent taken Methyl supps since about April 5, how do you figure I am able to sleep? I used to take L-Tryptophan, P5P, Doxepin, and REST & RESTORE (GABA, L-Theonine, Scullcap, Chamomile, PassionFlower, 5HTP and Melatonin.) I could see it if I were continuing the Methl supps, or my OLD supps, but I'm not. Any thoughts?
    [This Message was Edited on 04/14/2007]
  15. elliespad

    elliespad Member

    I think I added a few letters to your name, didn't I? But goood idea, thanks.
  16. findmind

    findmind New Member

    Hello, dear person...

    Just wanted to jump in here about UTIs and IC. I stopped salt and all of my bladder problems ceased! It was amazing. I was sure I was going to have to have those "invasive" thingys done to me, LOL.

    I use only Mrs Dash now, and it has made a world of difference in my life.

    Best to you,
  17. annade

    annade New Member

    Hi Elliespad,

    I was just curious if you are still s=working with Dr. G and how that is going? I actually started seeing him because of you, thanks! I have one more lab test to do and then I will be meeting with him again. I look forward to his analysis of the lab results.

    Just wondering how you were doing. Hope the bladder pain has cleared.
  18. elliespad

    elliespad Member

    I actually have an appointment tonight to go over my test results. Will let you know how it goes.
  19. annade

    annade New Member


    Definitely keep me posted on what Dr. G says. Sure hope he has some good advice and a treatment plan for you. Take care.

  20. hi all,

    are you saying that we need to stop the garlic?

    ive been taking a one a day,odourless garlic capsule and its 2mg garlic extract,equivalent to 200mg of fresh garlic.

    im having left kidney pain and seeing a bright yellow pee.

    do you think im having a bad reaction to the garlic? i bought it from superdrug,in the uk.

    i think im going to stop taking it as i feel weird,light headed.

    love fran

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