The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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New Here...Looking for Help!!

Discussion in 'General Treatment' started by cbmtl, Feb 6, 2014.

  1. cbmtl

    cbmtl

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    Greetings:

    This is a wonderful site/resource; happy to have found it.

    In the name of full-disclosure, I have not been diagnosed with CFS, which, from reading other's stories, seems like an extremely difficult task. I do however suffer from debilitating fatigue -- physical and cognitive --, among many other symptoms, and based on recent genetic tests, appear to be at a heightened risk of CFS.

    I was hopeful to share a bit about my past, symptoms and ask for suggestions/treatment options.

    Since early childhood I have suffered from a temperamental stomach, chronic anxiety and poor long-term memory. Although I made my way thru college, graduate school and had a good career, I always felt highly anxious -- which is not my personality at all -- and perpetually tired/falling behind.

    4-years ago, after I burned out of career #2, I was diagnosed with celiac disease. I was very hopeful that strict adherence to a gluten-free diet would greatly reduce my symptoms. Unfortunately, it did not. In fact, the gluten-free diet worsened many symptoms and caused the onset of others. It initially felt like I was going thru withdrawal – which, I gather I was. Follow-up testing have shown that I am faithfully following the diet. Go figure.

    The celiac diagnosis was 4 -- very forgettable -- years ago. Since then, I have seen countless doctors, received a few addt’ diagnosis, and have not been able to work full-time. My journey also includes (til now) unresponsive hashimoto’s disease and dysthymia. Associated symptoms include: extremely debilitating fatigue, which may or may not be due to non-restorative sleep and horrible brain fog, which makes basic tasks difficult. Multitasking…forget about it. I also often have this odd wired feeling, headaches, heart ache (literally), lock jaw, mild hand tremors and chronic GI symptoms. And, of course, there is some joint pain/stiffness stuff going on.

    Genetic testing revealed that I have a heterozygous mutation of all 3 MTHFR genes, as well as COMT V158M & H62H, both VDR genes, MTRR A66G, and both CBS genes. I also have a homozygous mutation of MAO-A R297R and BHMT 02, 04, 08. Sound like I did NOT hit the genetic lottery jack pot.

    Recent labs/tests show: low vitamin-d (though in the 40s/50s w/ 5000 IUs daily), low testosterone, low PTH, elevated TPO (thyroid), slightly elevated cholesterol and glucose serum -- seems odd, as I am a 41 year old male, who, until recently, was quite active. Interestingly, I also have elevated vitamin E and vitamin B-12, as well as low iron and borderline low cortisol; probably some adrenal stuff going on. Finally, and I found this very interesting, I recently had my neurotransmitters checked, which I know traditional medicine doctors might dismiss, but they were all very low, which given my physical and occasional mental state, makes sense.

    So, I am at a loss for what to do/where to start. I take supplements, but have cut back, given recent genetic test results. Suggestions? Amino acids? CBS protocol? Methyl/Hydro-cobalamin? Active form of folic acid? Exercise -- which I have been doing gradually, and seems to help.

    I just want to get better. As a middle-aged male, I feel the added burden of not being able to properly work and provide for my family. Unfortunately, I can't say that my wife has been entirely understanding. How do you truly describe a fatigue that cannot be ignored and does not respond to sleep?

    Be well
     
  2. Radio

    Radio

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  3. justy

    justy Senior Member

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    Welcome, sorry to read about your woes. No suggestions here i'm afraid, just wanting to say hi.
    I wonder if it's worth you seeing an M.E/CFS specialist, many of them also see patients with difficult to diagnose and treat illnesses

    Take care,
    Justy.
     
  4. cbmtl

    cbmtl

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    Thank you both for the kind words and suggestions.

    I'm trying to go about this in a logical/scientific way, but between life's responsibilities, the volume of information on CFS and brain fog, it's been a bear of a task.

    I'm curious whether you have insights on how to differentiate CFS from say, adrenal fatigue or a thyroid condition. My labs show a mild case of both -- if that's possible -- but my symptoms are so disparate, which leads me to believe that maybe there are a number of active conditions.

    It sounds like CFS is not a curable condition (yet), so I'm hopeful that it's truly something else. Regardless, in the few hours daily that I can manage to stay awake, I'm gonna try to locate a local CFS specialist; local being South Jersey, near Philadelphia or possibly a doctor that provides remote consults.
     
  5. Soundthealarm21

    Soundthealarm21 Senior Member

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    Have you been tested for mycotoxins? (Mold)
     
  6. cbmtl

    cbmtl

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    No, but I will add it to the growing list of tests.

    Thank you for the suggestion.
     
  7. Soundthealarm21

    Soundthealarm21 Senior Member

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    Dallas, TX
  8. SOC

    SOC

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    @cmbtl
    You might want to look into seeing Dr Derek Enlander in NYC. He will be able to tell you if you have only adrenal fatigue or thyroiditis or if you have full-fledged ME/CFS. He will be able to give you the aggressive treatments you'll probably want if you do have ME/CFS.
     
    justy likes this.
  9. justy

    justy Senior Member

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    I do believe a mild case of both is very possible and seen in many PWME/CFS (People with M.E/CFS)

    I have adrenal issues showing on 24hr saliva testing - but ACTH stim test for Addissons was normal. My thyroid also appears to be struggling with varying labs showing a falling T4 over the past 5 years, now only just in range. Unfortunately trying to treat the thyroid with first levothyroxine and then Armour thyrois only unmasked the adrenal issues and causes severe side effects.

    I cant stress enough how going to see a Dr - such as Enlander in NY who will order all the tests, look a t them for you and advise on treatments will save a lot of time and money in the long run.

    Take care,
    Justy
     
  10. cbmtl

    cbmtl

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    Justy - Very interesting to hear about your response to thyroid meds. I too have had a very poor reaction to all thyroid meds; my alternative medicine doctor wants to try compounded thyroid meds. All so confusing. I have been reading the Stop The Thyroid Madness message board and it appears as though there are a segment of thyroid patients that respond to higher dosage of Armour, NDT, etc, once any adrenal and/or hormone imbalances have been resolved.

    Big thanks all for the treatment/test suggestions and doctor recommendation. While I certainly don't want a CFS diagnosis, it would be helpful to have a more inclusive diagnosis, as opposed to individually attacking these symptoms with unknown origins. Or, at the very least, ruling out CFS and then focusing on certain treatment options.

    I'm still hopeful. I guess that's all anyone ever has.
     
    justy and Soundthealarm21 like this.

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