methylation/glutathione protocol 5

Discussion in 'Fibromyalgia Main Forum' started by deliarose, Apr 9, 2007.

  1. deliarose

    deliarose New Member

    hi all

    here we go. Has anyone had any thoughts about how much testing they are going to do as they go along?

    I'm talking about the UTMs, the UAAs etc.

    delia
  2. deliarose

    deliarose New Member

    you're seeing results?

    And good find on the eye doc. Rare to find a mainstream doc open to the benefits of alternative medicine.

    Delia
  3. deliarose

    deliarose New Member

    I meant are you seeing results on the protocol. Is that why u are thanking dncn.. ?

    But you answered that question. Honestly, you're hysterical.

    delia
  4. deliarose

    deliarose New Member

    but i hear that if u order this 1 thru yasko u get a uee as well ie urine essential elements...minerals....see sara's post about this on the yasko list,
    delia
  5. deliarose

    deliarose New Member

    Here's what Quest tests for in its UAA: Phosphoserine, Taurine, Phosphoethanolamine, Aspartic Acid, Hydroxyproline, Threonine, Serine, Asparagine, Glutamic Acid, Glutamine, Sarcosine, 2-Aminoadipic, Proline, Glycine, Alanine, Citrulline, 2-Aminobutyric, Valine, Cystine, Methionine, Cystathionine, Isoleucine, Tyrosine, Phenylalanine, Beta Alanine, 3-Aminoisobutyric, Homocysteine, Trythoophan, Ornithine, Lysine, Arginine, Creatine, Carnosine, Anserine, 1 and 3-Methylhistidein.

    They also do a special UAA that looks at Isoleucine, Leucine, Phenylalinine, Tyrosine, Trytoophan, Valine among others.....

    NB they do NOT appear 2 test 4 ammonia which is apparently 1 of the things u need per Rich.

  6. deliarose

    deliarose New Member

    doctor's nurse xeroxed it 4 me.......
  7. roge

    roge Member

    I am not doing the methyl protocol currently but i did recently do some metabolic testing a few weeks ago before i got really sick with my first nasty cold in almost 4 years , slowly recovering.

    4 panels for $500 cdn, not 2bad i guess ..all out of pocket

    amino acid
    organic acids
    oxidative stress
    antioxidant

    will post results when I get them, would say in another week but have a consult with the dr. and pharmicist in mid May so might not be until then...

    peace
  8. tvpro36

    tvpro36 Guest

    Hi,

    You might also try to get a CDSA to check on your gut as long as you are collecting tests. ;) Although that doesn't really tell you anything about how the short program is working and leads you into doing the gut protocol from the long program. Otherwise, yep, UAA, MAP (organic acids), and UTM (preferably with UEE).

    Dr. Amy's UTM doesn't include UEE, it's that the UEE includes a UTM. So you can buy a plain UTM or, for more money, you can get a UTM-UEE which includes the UTM plus essential elements. So it's just that you don't/can't buy a UEE by itself.

    Dr. Amy only looks at urinary ammonia, not blood. If it's free and you're taking blood anyway, might as well do it, but I don't know if it will tell you anything.
    Here's some info from Dr. Amy's forum (also in the Puzzle of Autism book I think):
    http://www.ch3nutrigenomics.com/phpBB2/viewtopic.php?t=3011

    "1) Indications of CBS up regulations

    Urine AA Test
    Elevated taurine
    Elevated ammonia
    Decreased citrulline
    Decreased methionine
    Elevated phenylalanine

    OAT/MAT
    Elevated hippuric
    Decreased fumarate
    Elevated phenyl lactate, phenyl acetate, phenylethylamine,
    Decreased oxaloacetate or decreased oxalates
    Secondary to decreased oxalate you can find elevated
    hydroxymethylglutarate and elevated hydroxybutyrate.

    Elevated ammonia requires more urea cycle function, depleting
    oxaloacetate from the Krebs cycle. Imbalances in oxaloacetate
    can lead to an increases in the level of hydroxybutyrate.

    Blood work
    Low CO2
    Low creatinine

    You may not see changes in these values with CBS up regulations until you
    begin to supplement the methylation cycle to bypass other mutations in the
    pathway."

    Trina ;)

  9. deliarose

    deliarose New Member

    maybe ask Rich if that ammonia test wld be useful. Is it a urine collection thingy?

    Between us all, maybe we can figure out a way to get the testing thru Quest.

    oddly, Trina said the UAA thru Yasko runs $200 some dollars. Quest's UAA runs $800 some dollars.

    Guess u can hike yr prices when you're the only game in town?

    delia
  10. deliarose

    deliarose New Member

    so quest's blood ammonia test wld not be that helpful.

    Oh and citrulline is on the Quest UAA. So the only thing missing from the Quest UAA is ammonia. It has everything else that Yasko is looking 4, incldg creatinine.

    delia
    [This Message was Edited on 04/10/2007]
  11. ruby711

    ruby711 New Member

    I am still collecting and learning about Dr. Y's program and will start with the Urine toxic metal test (doctor's Data) and probably the UAA which I think I have done in the past- about 4 yrs ago. I may take 2 of the supplements before the testing (folapro & B12 hydroxy form) as I have taken them in the past. It is definitely a challenge to get all aspects of this program right with all the limitations involved in this dd. In any case I find it very interesting and hope to continue inching my way forward.
    ruby
  12. lbconstable

    lbconstable New Member

    Hi all,

    I decided to back off on the Folapro until the Perque B comes in tomorrow. So Sunday & Monday I took only 1/4 tab of Intrinsi B12/Folate.

    I haven't had the mild headache since - don't know if that's the reason, but I don't mind waiting a few days.

    Saturday a.m. had great energy, started to fade about 1:00p.m. Sunday had great energy until about noon and then had a second wind around 6:00 pm and couldn't get to sleep until midnight. Still woke up at 6:30 a.m. Monday morning and had unbelievable great energy and mental clarity until about 2:50 p.m. that's when energy started to fade until I went to bed about 10:00p.m. Got up at 7:00a.m. and have had great energy all day. I took a SAM-e this morning. Wondering if this is helping maintain energy today...

    The rest of the supplements and "The Book" are supposed to arrive tomorrow. So I'll be ramping up. I'm very excited.

    dncn- Thanks for the nutritiondata link. I'm going to be spending some time tracking my families nutrition! I didn't mention it in my previous posts, but dietary adjustments have been a big part of my protocol as well.

    My daughters and I have been on The Specific Carbohydrate Diet since October. It's designed to promote intestinal health for people with Crohn's disease, ulcerative colitis, diverticulitis and Autism. It's been great for us. My older daughter and I had a pretty decent herx the first week on the diet. That's when I decided we really did need it.

    As far as testing I definately want to get the UTM through Doctors Data and possibly the UAA through quest. It seems like ammonia would be something one could do at home with a color type strip test. I haven't seen this, but it seems simple enough - probably not as accurate as a lab reading.

    Laurie
  13. lbconstable

    lbconstable New Member

    Or any other interested member,

    Three years ago I had some testing done on my detox system. I had a genetic profile done by Genova Diagnostics which is a division of Great Smokies Laboratory and then I had a function test done also by GSDL. The functional test involved me taking a caffeine tablet, an acetaminophen (Tylenol) tablet, and an aspirin tablet. At some prescribed time later a blood, urine, and saliva sample was taken and evaluated. My liver was quite sore for about a week afterwards (which also included pain in my right shoulder that my chiropracter attributed to my liver).

    These are my results. I welcome any thoughts...

    **********************************************************
    DetoxiGenomic Profile (DNA test from Genova Diagnostics)
    June 2004

    SNP's at:
    CYP1B1
    CYP3A4
    COMT
    NAT2
    SOD2

    Null allele at:
    GSTM1
    ***********************************************************
    Detoxification Profle (Functional test)
    July 2004

    Phase I measured by caffeine clearance normal

    Phase II:
    Plasma Cysteine 3.58 mg/dL (ref range 3.10 - 3.9)
    Plasma Sulfate 4.40 mg/dL (4.8 - 5.3) very low

    *Glutathione Conjugation measured by Acetaminophen mercapturate % Recovery
    3.7% (ref range 5.6 - 11.4) very low

    *Glycine Conjugation measured by Salicyluric Acid % Recovery
    45% (ref range 30 - 53) in range

    *Sulfation measured by Acetaminophen Sulfate % Recovery
    24% (ref range 16 - 36) in range
    *Glucornidation measured by Acetaminophen Glucuronide % Recovery
    46% (ref range 27 - 56) in range

    Free Radical Markers:
    Hydroxyl Radical:
    Catechol very high at .031% (ref range <=0.024)
    2,3 DHBA very high at .0128% (ref range <=0.0128)

    Free Radicals:
    *Urine Lipid Peroxides
    in range at 7.7nmol/mg (ref range 3.0-9.0)
    *Reduced Glutathione
    very low at 23mg/dL (ref range >=32)
    *Glutathione Peroxidase
    in range at 22.9U/gHgb (range 20.3-38.1)
    *Superoxide Dismutase
    in range at 1811U/gHgb (ref range 1610-2162)


  14. deliarose

    deliarose New Member

    I get better and better by the day. Feel so much more comfortable in my own body. And I can't believe how messed up my mind was.. No wonder I couldn't function.
    Also didn't realise how much stress.. physical as well as other types .. I was dealing with.

    It's such a paradox cos I can help myself a lot more now than when I was really ill. I can make decisions, I can prepare good meals. When you're really struggling, it's hard to do that...you're just too ill to help yourself.

    It's a miracle anyone makes it back from this thing.

    Oh, and I think those B12 (hydroxocobalamin) shots are really helping. I lerve B12!

    Just a word of encouragement for y'all.

    But for balance, I should also say that I seem to need much more sleep, I still struggle with concentration and my mental function is still way short of what it was.

    This is a process, so I hope the cognitive stuff will continue to improve, but it's not clear what the endpoint will be. I just have to hang on for the ride.

    delia
    [This Message was Edited on 04/11/2007]
    [This Message was Edited on 04/11/2007]
  15. cherylsue

    cherylsue Member

    That's wonderful you are feeling better. Do you think you will be ready to go back to work after you have a period of "good" steady state?

    Hugs,
    CherylSue
  16. Diva55

    Diva55 New Member

    Hi Deliarose
    I'm so excited that you're doing well on the protocol.
    I've been trying to follow it & work it out. I joined the Yasko Yahoo group but got very lost quickly on the mail there.

    I've downloaded info but now am completely lost on where to start with this.

    I'm in the UK so we can't get the blood tests you can order over there.

    I guess I should try & get my head around it when I have some energy and just get started on the supplements etc & not worry about testing. But it's just confusing me at the moment!

    Thanks to everyone trying this out for your updates - very inspiring.

  17. deliarose

    deliarose New Member

    I hear you.
    I really haven't delved into the Yasko stuff as much as I ought. I just dived into the short form.

    Yes, the conversations on the Yasko list are pretty technical at first blush. Have you read the backgrounders in the files section?

    It's probably a good place to start, and also the book.

    Also, the mitofuel that has been discussed to death on this board is a component of step 1 so that might be a place to start, esp. if u have fatigue.

    Then you could move on to the methylation supplements when u felt ready.

    Also, Pam Getwellgirl on this board, is in the UK and has been doing some of the protocol for 6 months and is doing some of the testing.

    Maybe you could get her email in chat or off the Yasko list and correspond? Pick her brains?
    delia
  18. Diva55

    Diva55 New Member

    Thanks for replying.

    I have the protocol on my priority list to look into.

    I will follow all the updates on this board & give up on the Yasko group for the moment as the discussions there are beyond my limited brain capacity!

    Best wishes
  19. deliarose

    deliarose New Member

    that's the plan.. course it all depends on where my brain function is.

    In order to resume my career, my brain has to make a pretty full recovery. Here's hoping.

    delia
  20. richvank

    richvank New Member

    Hi, dncn.

    You asked about what tests you might get at Quest in Irving.

    This is a pretty wide-open question! They offer a lot of different tests, some of which might be relevant to cases of CFS, but they don't offer tests for some of the really important things in CFS. It also depends on what you hope to accomplish with the testing. If you want to document some parameters that might change as your health improves, that would define one list. If you want to measure parameters to aid in treatment, that would be another list. Some people (not you, because you are getting better!) want to do tests to help them get disability. That would be another list. People who just want to diagnose CFS would have a different list. And of course, it all depends on what you can sell to your doctor and your insurance company.

    I did look at what they offer, and I can write down some things that I think could be abnormal in CFS in general, but you will have to decide whether you want to try to get them or not, depending on the above factors and also depending on the details of your case. This is sort of a fishing expedition, but I understand the desire to get what you can that would be paid for by your insurance and could also be relevant, so here are my thoughts:

    It would be nice to measure glutathione, but they don't offer that. Instead, you could get a measure of oxidative stress by measuring malondialdehyde, but they don't offer that, either.

    It would also be nice to evaluate how your methylation cycle is doing. They do offer some things that would be relevant to that. For example, the blood and urine amino acids tests may have methionine, cystine or cysteine, taurine, and maybe some others. They do have a test for homocysteine (31789 in the blood or 26318 in the urine). Sometimes that is high or low if there is a problem with the methylation cycle. They have a B12/folate test in blood serum (7065), and they also have methylmalonic acid tests for B12 (34877 or 348979).

    They have some genetic tests, such as for MTHFR polymorphisms (17911) and for three of the CYP450 detox enzymes (17634 and 11294).

    They have an organic acids test that they call the full panel, but I don't know what all is on it (38067). If it's like the ones from Genova or Great Plains or Metametrix, it could be helpful. If it's just designed to look for inherited mitochondrial disorders, that wouldn't be too helpful.

    There is a red blood cell magnesium test (623).

    There's a urine sulfate test (11013).

    There's a blood creatine test (37091).

    There's a blood carnitine test (30299).

    There's a blood coenzyme Q-10 test (10253).

    There are catecholamine tests. One is 314, but I don't know exactly what they measure.

    There are some mercury tests. The 24-hour urine test would give an idea of excretion (36441). There's a blood test that would indicate current or recent exposure. There are probably other heavy metals tests as well, such as for lead and arsenic and others.

    There is a natural killer cell function panel (34184).

    There are cortisol tests, such as the free and total one (37077). Cortisol varies during the day, so it's better to do several over a day, but if you have only one chance, you could at least get one number for free and one for total at whatever time you were there.

    There are antibody tests and PCR tests for various pathogens, including viruses (various herpes family and Coxsackie B), Chlamydia, mycoplasma, Babesia, Erlichia, Lyme (their Lyme test misses a lot compared to Igenex, though).

    There's a red blood cell selenium test (3341).

    There's a total B and T cell count (39588).

    Triglycerides are at 896.

    Cholesterol (LDL and HDL) is at 334.

    They have thyroid panels, but I don't know what's on them. It's desirable to get TSH, T3, T4, free T3, free T4, and thyroid antibodies.

    A complete blood count and a regular blood chemistry panel would be helpful, as would a regular urinalysis.

    Well, those are the things that come to mind. There are probably others as well. It's really best to get a complete panel that looks at essential elements and toxic metals, which is what Amy Yasko offers on her site, but I don't know if Quest offers something like that or only individual elements and metals.

    Rich