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Any advice?

Discussion in 'General ME/CFS Discussion' started by burgeo10, Jun 1, 2014.

  1. Allyson

    Allyson *****

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    thanks for that Caledonia - very interesting - any info on Alpha 1 as well please?

    Ally
  2. Allyson

    Allyson *****

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    yes treating the POTS helps but it also helps if you now what kind of EDS you have - also there are cardiac issues with EDS so anyone with EDS needs an echcardiogram every 5 years - all types - it is also genetic so you can pass it on ! EDS also has dental risks and pregnancy risks so it is well worth looking into for every one
    Plus it is such a logical explanation for many of our symptoms finally that it is reassuring to see physical causes for everything


    Ally
    SDSue likes this.
  3. Allyson

    Allyson *****

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    also as far as pacing goes it can be refined by knowing about POTS ?EDS- is upright time that wears you out not activity per se - so you get more good time

    Ally
    SDSue likes this.
  4. burgeo10

    burgeo10

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    thnks @caledonia ! all my COMT were -/- if that helps. ive attached my detox SNPs

    Attached Files:

    Allyson likes this.
  5. caledonia

    caledonia

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    Your COMT/VDR taq combo is the least sensitive, so you shouldn't have to worry about mood swings from methylcobalamin; Yasko suggests taking all three types of B12 - hydroxycobalamin, methylcobalamin and adenosylcobalamin.

    Detox SNPs

    CYP1B1 - can cause estrogen dominance which can cause estrogen related cancers such as breast or cervical cancer in females, and prostate cancer in males. You can eat cruciferous veggies, or take DIM, IC3 (components in cruciferous veggies) to lower estrogen if it's high. Calcium d-glucarate is suggested instead of the DIM or IC3 if you have a CBS mutation.

    CYP2C9 - detoxifies Coumadin and sulfonylureas. If you ever needed to take Coumadin, you would likely need a lower dose than normal.

    CYP2C19 - detoxifies proton-pump inhibitors (e.g., prilosecĀ®) and many anticonvulsants (e.g., valiumĀ®). I believe this is an upregulation. I have this mutation and did better with longer acting versions of drugs going through this pathway - so Dexilant instead of Prilosec, and Clonazepam instead of Xanax.

    CYP2D6 - detoxifies 20% of all prescription drugs including tricyclics, MAOIs, SSRIs, opiates, anti-arrhythmics, beta- blockers, Cimetidine, etc. You could have problems tolerating these drugs.

    GSTP - a mutation (and you have three!) means you require more glutathione than the average person. You can raise glutathione via a methylation protocol. If you decide to supplement glutathione directly, Ben Lynch suggests taking NAD (form of niacin) with it so that you make the good reduced glutathione instead of the bad oxidized glutathione.

    This is probably a big reason as to why you're sick, as your methylation SNPs don't look that bad in the scheme of things.

    SOD2 - super oxide dismutase. This affects the mitochondria and thus energy. One person with a SOD2 +/+ mutation reported that a SOD supplement, Biotec Extra Energy Enzymes, got them out of bed. Another person reported this supplement had too much sulfur in it so it wasn't well tolerated. Another option is to supplement with mitochondrial supplements such as carnitine, ribose, Co Q10, NADH, etc. This approach worked better for me.

    NAT - N-acetyltransferase - detoxifies petrochemicals. People with NAT problems can be chemically sensitive to chemicals like perfume, gasoline, toluene, xylene i.e., multiple chemical sensitivity. Increased risk for developing lung, colon, bladder, or head & neck cancer.

    Don't smoke, and avoid second hand smoke and chemicals. Eat your fruits and veggies, especially cruciferous veggies, to help detoxify. Vitamin B5 (pantithene), can help NAT.

    =-=-==-=-
    The general advice for detox SNPs is to eat your fruits and veggies and avoid toxins.
    Allyson likes this.
  6. caledonia

    caledonia

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    Sorry, I'm not sure what that is - do you mean Alpha-1 Antitrypsin Deficiency?
    Allyson likes this.
  7. burgeo10

    burgeo10

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    thanks so much @caledonia , i really really appreciate it. Now unsure what to do though... am tempted to start Yasko's protocol and see what happens, but will probably try and see a methylation doctor in the UK first. Am taking b12 pills twice a day at the moment, and 1,000mg of l-carnitine, whilst ive changed my diet to completely vegetable and protein, but i feel worse than before. does anyone know why this might be? i dont want to do myself any harm by slipping further, but maybe its detox symptoms
  8. burgeo10

    burgeo10

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    or @caledonia, do you know of any doctor I could send my results to and who could advise me? im tempted to try and book a doctor in the USA, but I assume itll be incredibly expensive and have a long waiting time. The other option I guess would be to order to Yasko's nutrigenomic test...
  9. Soundthealarm21

    Soundthealarm21 Senior Member

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    What type of treatments did your daughter undergo?
  10. Soundthealarm21

    Soundthealarm21 Senior Member

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    You might be feeling worse because you're no longer eating sugar and sugar is highly addictive. When I first switched diets I felt horrible for a few days after. If you're only eating vegetables and protein I highly suggest introducing fats. Fats should make up quite a bit of your diet (no trans fats). Your body will get to the point (Ketosis) where it burns fat for fuel instead of glucose.
  11. SOC

    SOC Moderator and Senior Member

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    Valtrex and Valcyte primarily. She also gets treatment for OI. She takes a fair number of supplements to support her health both when she's in remission and when she's not. She paces when she's out of remission including daytime naps when needed. She is cautious with her activity when she's in remission. Bottom line though, it's the Valcyte that puts her back into remission each time.
  12. Soundthealarm21

    Soundthealarm21 Senior Member

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    Thanks for the answer. Gosh, those antivirals just scare me. You know about how sick (detox, toxic to liver) they can make you and what not. They're not off the table, but i'm saving those as a last try type thing.
    PNR2008 likes this.
  13. SOC

    SOC Moderator and Senior Member

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    And having a nasty virus, or multiple nasty viruses, replicating uncontrolled in your body is not scary and seriously bad for your health?

    Valcyte is a medication that needs to be handled properly with careful monitoring by a knowledgeable physician. Liver side effects and neutropenia are reversible when caught in time which is why close monitoring is necessary.

    Before Valcyte, my daughter was about to drop out of college because she was too ill to go to class. Without Valcyte she would be stuck sick at home with no future. Instead, she has a degree in engineering, is in graduate school in engineering, and is engaged to be married.

    Would her life be better if we'd decided to wait because Valcyte was "too dangerous"? I don't think so. From the first month she took Valcyte, she improved. She had no side effects from the Valcyte. Instead of being horribly ill for the past 5 years, she's been mostly functional.

    Perhaps you are not yet as sick as either my daughter or I was when we started Valcyte. In that case I can see why you see it as some kind of last resort. I suppose from our perspective it was a sort of last resort -- staying as ill as we were at that time was not a viable option for us.
  14. Soundthealarm21

    Soundthealarm21 Senior Member

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    @SOC I am very sick. I'm in bed basically 95% of the day. I did have to drop out of college because I was too ill to go to class. I, like your daughter, am only 22 years old.

    Detoxing makes me go through insanely scary symptoms. I have uncontrollable panic attacks, severe depression, and it's hard to tell that i'm not in a dream. Sitting there suffering through those symptoms is hard. I ask myself questions: how do I know if this is actually working or just adverse reactions? If it is working, how long until the pain goes away? 1 day? A week? Months?

    I do not try anything without a well worked out risk/benefit analysis. What I listed above scares the hell out of me.
    PNR2008 likes this.
  15. SOC

    SOC Moderator and Senior Member

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    And living your life the way you are now doesn't scare the hell out if you? NOT taking necessary meds has scary consequences also.

    I'm not suggesting you should take Valcyte. If you don't have chronic hhv6 or CMV, then you probably don't need Valcyte and the risks clearly outweigh the benefits. Also, some people with MCS-type symptoms can't take much of anything.

    Unlike my daughter, I was one who had a strong IRIS-like rxn to Valcyte. It was like a 10 week long bad crash -- the usual ME symptoms plus shingles and other infections. It was all worth it because I was so much improved afterwards.

    I'd do it again in a flash. In fact, when I needed Valcyte again, I jumped at the chance, knowing it was possible I'd have a long bad patch. I didn't this time, though.

    I'm not a quitter or a whiner. I'm willing to take some suffering if I have to in order to get better. For me, if the choice is suffering and misery for years and maybe for the rest of my life, or suffering a few weeks, or even months, for a good chance at a better life, I'm taking the chance at a better life. My daughter is the same.

    Not everyone is in the same life or health situation and not everyone has the same personality. Each one of us makes our own decisions based on those factors.

    I hope you find something to manage your panic attacks and depression, and a treatment plan for your illness that gives you your life back. No one deserves to spend their life sick in bed.
  16. Misfit Toy

    Misfit Toy Senior Member

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    Hey, @Soundthealarm21 ! I agree with you and you have every right to feel what you feel. Feelings are feelings. Valcyte is a possibility, but only when YOU are ready. It doesn't sound like you are a quitter to me or a whiner. It sounds like you are a smart consumer. Someone who weighs the pros and the cons. Good for you! You should with this disease as one wrong turn can have horrible consequences and who wants that? Valcyte can make some people really sick, so you have to mentally be in a good place for it.

    Do what you feel is right, in your gut. I am sorry you are so sick and detoxing also makes me horribly sick. To already be so sick and then become non functioning and feeling like death is not a good time. Detoxing can do that. Changing a diet can do that.

    @burgeo10 , when I quit carbs I got really sick and had to put them back in my diet. Not having enough energy and then quitting carbs was not working for me. Maybe have a small portion of a carb a day? A gluten free carb perhaps or a sweet potato. Who knows. Do what's right for you and what feels right.
  17. caledonia

    caledonia

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    Oral B12 is only 1-2% effective. The B12 should be sublingual or by injection to bypass the stomach. If they are sublingual (and assuming they're an effective brand) that's too high of a starting dose. Carnitine could also be too high of a dose and make you feel revved up. You might need to add some starches and/or fat to the diet.
  18. caledonia

    caledonia

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    There is a Practitioner list in my links. Some of them do international consultations by phone or Skype.
    Allyson likes this.
  19. Soundthealarm21

    Soundthealarm21 Senior Member

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    @SOC

    "I'm not a quitter or a whiner."

    I hope that's not a jab at me, but given the context i'm assuming it is and i'm hoping you were just caught up in the moment emotionally when typing that out (because you don't know anything about me) about how being aggressive got your daughter's life back and to a good degree yours. That's an emotional topic I get it. I just hope you don't consider other members here quitters or whiners because detoxing makes them too sick to continue, and I know there are a lot of them here.

    "And living your life the way you are now doesn't scare the hell out if you?"

    Of course it does. But what scares me more is living WORSE than the way i'm living now.

    Valcyte is on the list and in fact my doctor and I discussed it today. I'm on quite a few other meds and have been letting them try and do their thing first (Hyperbaric Oxygen, IV vitamins and GSH, Doxycycline, Plaquenil, Diflucan, and EDTA). The big problem i'm having that is not improving is persistent EBV infection. It's been high for sure for over a year. Probably a lot longer than that. We just sent off blood work for EBV PCR instead of the regular panel and a decision will be made after that on antivirals.
    Misfit Toy and PNR2008 like this.
  20. SOC

    SOC Moderator and Senior Member

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    Of course it wasn't. It was a statement about me, not about you. You made a strange assumption when you assumed that at statement about me was somehow all about you. :rolleyes:

    Wow, you sure are reading a lot into some direct statements about my daughter and myself. I was talking about my daughter and myself, not about YOU. It's not all about you.

    I certainly don't consider other members quitters or whiners. Have I ever said so? No, it's just you making stuff up.

    Valcyte is not the med for EBV in any case, so you probably won't need to worry about Valcyte side effects after all.

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