The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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How to initiate treatment?

Discussion in 'General Treatment' started by horcrux, Sep 7, 2014.

  1. horcrux

    horcrux

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    Hello, I'm trying to unravel all of this nonsense that's been going on for the past few years, and I am at a loss as how to proceed. I'm 24 years old and am at the point where I am transitioning from the world of pediatrics into having "grown-up" doctors.

    I used to be really active and healthy, but then I got Mono, tested positive for EBV, and I've NEVER been the same. Unrelenting fatigue, chronic sore throat and congestion, frequent headaches, muscle weakness...I'm feeling a little better now, and want to use this time to find out what's wrong and any treatment that may help. Before I didn't have any energy to make appointments let alone attend them!

    I've done the psychiatrist thing for three years with no success and my doctor KNOWS that. He ordered labs, just the Complete Metabolic Panel and basic Thyroid stuff. Besides high CO2, Sodium, and low Glucose and Vit D, everything was pretty normal.

    It seems advocating for oneself, especially in the muddy waters of CFS, is not warranted, shunned, etc. I deserve to be taken seriously. How do I approach this in a way that is open-minded, and not like I'm seeking out diagnoses? Because I'm not. I just feel I have to do the research for doctors and spoon-feed them/ take the initiative because if I don't, no one will!

    PS - sorry if I sound defensive, my mom accused me of having Munchaussen's
     
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  2. Sushi

    Sushi Senior Member Albuquerque

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    @horcrux

    Have you considered going to see an ME/CFS specialist? These are the ones who do more appropriate and extensive testing.

    If you want to give your location, someone might be able to tell you who the nearest one is.

    Best wishes,
    Sushi
     
  3. ahmo

    ahmo Senior Member

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    Hi @horcrux I'm sorry you're feeling so unwell, and that you'e veen shunted down the path of psychiatrists and 'Munchaussen's Syndrome':mad: It's likely that you'll have to start with making diet modifications. many of us need to eliminate gluten, possibly dairy. You might find even that makes you feel better in a short period. After 8.5 years of failing health, I've now been healing over the past 2.5. My lab tests have never showed anything on which to base healing, or the nature of what's wrong.

    Once I shifted my diet, I was able to uncover what essentially turns out to be missing vitamins, minerals, essential fatty acids. Plus ongoing detox. You will likely have to learn to be your own biochemist in this process.:nerd: There is a forum dealing with these issues specifically: http://forums.phoenixrising.me/index.php?forums/detox-methylation-b12-glutathione-chelation.6/

    There's a Vitamin B12/folate protocol that has helped many of us. You'll find a guide to this linked in my signature. That's really throwing you in the deep end, but it might give you some things to consider. Welcome to pr. You've come to the right place, I'm sure you'll get a number of responses and help in working out the best direction for you at this point. cheers, ahmo:hug:
     
  4. A.B.

    A.B. Senior Member

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    You need to have a talk with your mom. It is well known and accepted that infection can lead to profound long lasting fatigue in some cases.

    A short article is here http://www.anapsid.org/cnd/diagnosis/komaroff.html
    Plenty of other material can be found: just google "CFS" and "infectious onset" "begins with an infection" and the like.

    Then see a biomedical CFS specialist with your mom. You've tried the psychiatry approach, and your GP doesn't seem to know what to do, so it's time to see a specialist, while educating your family about this issue. Doubts and blame are completely useless!
     
    Last edited: Sep 7, 2014
    Valentijn and Sushi like this.
  5. horcrux

    horcrux

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    Thank you for the replies! I should add that my mother is a nurse. A nurse! She has suffered some psychological issues (anxiety, depression etc.) - and I DO believe those conditions can occur with some post-viral fatigue, whatever you want to call it. They don't have to be mutually exclusive as long as you address both. When you address only one cause, whether fictitious, somatized, paranoia/hypochondria, and three years of treatment (which for me was half a dozen SSRIs, SNRIs, benzos, etc.) is unsuccessful and actually exacerbates fatigue, either you are using wrong treatment, or you are addressing the WRONG problem.

    That being said, post-viral fatigue seems much more common and treatable than the psychic conditions listed above. My mom did think that I had "PANDAS" which I suppose may have some truth to it, but guess how you treat it? With antidepressants and therapy, of course! Why must people (my mother) conflate *this* to some subjective ephemeral condition à la 19th century hysteria?

    @ahmo , I've looked at several of the methylation detox, b12, folic/metafolic/metafolin/metafolate whatever suggestions/treatments, but don't know where to start. It seems like really helpful information, I even went out and bought Jarrow Methylcobalamin B-12 1000 mcg lozenges and Solgar Folate 1000 mcg, but I don't know what to do with it!

    @Sushi , I considered it, but money is always an issue, as is a not-very-supportive family, as is getting time my job that I'm struggling even to keep! I live in the midwest, United States.
     
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  6. horcrux

    horcrux

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    @A.B. - thanks, I'll take a look at it. I think my mom is more in denial that it COULD actually be the problem rather than being uninformed of the prevalence of many syndromes following the same pattern of infectious onset.
     
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  7. A.B.

    A.B. Senior Member

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    Family members with medical training can be particularly unhelpful (dare I say destructive) for some reason (I have two doctors in the family, so I know).

    That is even more of a reason to seek a specialist that can look at your case without emotional bias.
     
    *GG* likes this.
  8. ahmo

    ahmo Senior Member

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    Yes, it's very daunting. Just immerse yourself slowly, see if some of this make sense of your condition. that you've already purchased the B12 and folae suggests this might be useful to you. Unfortunately, the Jarrow MethylB12 is no longer rated so highly,:bang-head: altho in the last month, maybe their formula has shifted again, as some are saying it's working well. Generally, the highest rating at present, by Fred, of Freddd's Protocol, is Enzymatic Therapies 1mg MB12. There's info re taking these in the pdf in my signature, eg. put B12 along gum, not under tongue for better absorption...

    Good places to start:

    Diagnosing and Treating Vitamin B12 Deficiency‬
    http://www.youtube.com/watch?feature=player_detailpage&v=QqjyAeOLyKM

    howirecovered.com/active-b12-therapy-faq/ You might look thru other topics on this blog...

    from @caledonia:
    Methylation Made Easy

    https://www.youtube.com/watch?feature=player_detailpage&v=o4uqEDK6BvM

    Roadblocks to Successful Methylation:

    http://forums.phoenixrising.me/inde...to-successful-methylation-treatment-pdf.6827/
     
  9. daisybell

    daisybell Senior Member

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    I asked a family member to go to a conference for me...and that transformed their understanding of the problem in a way that no amount of explaining from me did. Listening to the research from the experts resulted in a huge mind-shift, and was the best thing that could have happened for me.
     
  10. horcrux

    horcrux

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    Thank you for the resources! I realize there are several resources on the site, but I don't know where to start so having some direction is really helpful! I'm reading through "A Guided to Freddd's Protocal" and hoping I can start soon.

    @daisybell that is a fabulous idea! I would love if both of my parents could go, my dad is a ped. neurologist, so he and my mom would have some background at least.
     
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  11. caledonia

    caledonia

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    Just replying so you can see the links in my signature.

    My Methylation Made Easy videos are a good starting point.

    There are two tracks you can take. One is Freddd's protocol, and the other is a Yasko Lite protocol (which is what I'm doing). Ahmo has good documentation on Freddd's and I have documentation on Yasko Lite. Some of the info in my documents can be useful for a Freddd type protocol too, such as Start Low and Go Slow, and Roadblocks to Successful Methylation.

    Have you done a complete thyroid panel - TSH, T3, T4, reverse T3 and thyroid antibodies, or just TSH?
    Often times you need a complete panel to catch a thyroid issue.
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    @horcrux I am sorry to hear about your struggle and my situation was identical in the sense that I was active and healthy, got mono from EBV and was NEVER the same. Do you have a lot of the autonomic dysfunction? That has been one of the biggest problems for me.

    You are also right that you have to research and seek out doctors who can be helpful and it takes a lot of work. I think seeing a CFS specialist is the only way to go, and if you can, it is well worth it.

    I have been blessed that my family and friends have never doubted that I have a severe physical illness. I know I have former co-workers and supervisors who have doubt how ill I am but I decided I cannot waste energy on this and just focus on healing and getting better.
     
  13. horcrux

    horcrux

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    I am so grateful for the videos! Coming from someone who finds reading exhausting, being able to watch and listen was really refreshing!

    [quote/] Have you done a complete thyroid panel - TSH, T3, T4, reverse T3 and thyroid antibodies, or just TSH?
    Often times you need a complete panel to catch a thyroid issue.[/quote]

    I have not. I will have to ask my doctor (and find other doctors!) to order it. Would they have any hesitations? Can I get blood work done myself?
     
  14. horcrux

    horcrux

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    I think I have a lot of autonomic dysfunction. That's how I described to to my psychiatrist, anyway!
     
  15. caledonia

    caledonia

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    I have not. I will have to ask my doctor (and find other doctors!) to order it. Would they have any hesitations? Can I get blood work done myself?[/quote]

    You might have to push them to get a complete panel done, but it's all standard blood test stuff. Make sure you get the results so you can look at them yourself. The reason being that sometimes labs will show up abnormal and doctors will neglect to inform you of that.
     

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