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Lupus V M.E?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by justy, Dec 20, 2011.

  1. merylg

    merylg Senior Member

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    Thinking of you justy :hug::hug::hug:
  2. xchocoholic

    xchocoholic Senior Member

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    Rats .. I lost my post ..

    Justy,

    Dr myhill's methods are the same methods being used to treat autism and other
    chronic illnesses by holistic or integrative doctors. Imho, Dr. mark hyman explains this
    very well. The book healing the 4 a.s is good too tho.

    Treating the guts, addressing nutritional deficiencies and detoxing helps most people.
    To what degree is dependant on the damage ...

    Meaning, a diagnosis is irrelevant because that can change. Many
    diagnosises disappear as one's body heals.

    Tc .. X .. Have a great holiday !

    Ps. The reason I was confused is that I thought you knew this already since you are seeing dr myhill. My bad ..
  3. merylg

    merylg Senior Member

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    Hi xchocoholic & justy, and all,
    I am following this thread with interest & I don't mean to hi-jack it in anyway. Thought I'd let you know that I tested Negative for Lupus & Sjogren's (ANA, dsDNA & ENA).
    My baseline ACTH was normal. Short Synacthen Test Cortisols were OK. PTH & TSH normal. UEC, Ca Alb Phos all OK.
    25-Hydroxy Vit D 81nm/L Ref Int (>=60)
    VB12, Serum Folate & Red Cell Folate all high due to my supplementation.

    I saw a different GP in my local medical centre today, and was pleased to discover he is nearly finished training to be an Integrative Practitioner...I joked that I was pleased because I needed one, but that he would then probably charge me upwards of $350/hr for a consultation!
    I discussed with him the possibility of being tested for Reverse T3: T3 ratio and he was happy to give me a request for that.

    @ xchocoholic: I understand the Integrative approach to treating Autism & chronic conditions...

    Do you think it matters then what pathogen might be involved in whichever condition??????????
  4. xchocoholic

    xchocoholic Senior Member

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    Hi,

    I'm still a newbie, 6 years at google med school, so I'm not sure if anyone knows the answer to thst
    question. Or it it even matters ..

    fwiw tho, I've been seeing an integrative doc for years and was positive for candida but now
    I'm not. My cdsa's have been negative for the bad bacteria and parasites they tested for but now
    I'm positive for h pylori and 2 parasites.

    I'm positive for hyperinsulinemia, thyroid antibodies but my t3 and t4 aren't abnormal, leaky gut, celiac, seizure disorder,
    Paget's, lung scarring, lbbb, And was positive for several nutritional deficiencies. I'm sure I'm forgetting something ...

    My only symptoms as long as I remain on the paleo / low carb / low glycemic / low oxalate diet
    are orthostatic hypotension, pots and pem. I suspect my pem is from my dysautonomia.
    Dr peckerman explains this as hypoperfusion.

    I'm convinced that this methodology is the only way to heal chronic illness. If we can heal. I have extensive damage at this point.

    Fwiw, Imho, everything else we see about me/cfs or other chronic illnesses are just rabbit holes that should be covered up so no one else slides down them ... Lol ..

    However, if any of these other protocals included
    fixing the gut, addressing nutrutional deficiencies and toxins FIRST, they might actually figure out
    the root cause of disabling me/cfs.

    Imho, this is due to dysautonomia because most people will not get bedridden from h pylori and parasites, but I did .. My dyautonomia was so bad that I couldn't stand up for more than a few seconds without having a petite mal. I stopped being bedridden even before starting the antibiotics. I'm experimenting with some supplements that are helping my dysautonomia but I'm not ready to discuss these yet. Not until I see marked improvement ..

    I suspect non disabling cfs can be addressed via DIET and
    supplements. Fwiw .. Gluten has been implicated repeatedly in most chronic illnesses.

    Tc .. X

    Ps. Sorry for the book. It's early here and I'm awake .. Lol ..
  5. justy

    justy Senior Member

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    Meryl - glad you got your results back, i dont know how long i will have to wait for my synacthen test result. I guess its good that they are normal, but in my experience normal results often leave me feeling more and more frustrated. I want to be able to look and see what is wrong and have proof for me, my doctor and my family that i am ill. so frustrating, especially when it leaves you with no treatment.

    Xchoc - yes i am a patient of Dr Ms and i do have some faith in integrative medecine, but that is not why i am her patient - i am her patient because its all weve got in the uk! I have had no change whatsoever from diet, (aprt from candid diet which cleared up my systemic candida and helped a bit with brain fog) my diet was so restricted for a long time, since coming off the diet i have noticed no difference at all.
    Some supplements have been a help with some symptoms eg magnesium has cured my cramps. But still the only thing that actually works is extreme activity avoidance, as soon as i up my activity levels i go backwards. The underlying condition is not being treated with this approach but sort of helped and managed (for me) Dont get me wrong, i am very grateful to Dr mYhill and her help has been great, but very slow nd not very dramatic and very expensive. What i would like to know is why i have such severe nutritional deficiencies after years and years of a very healthy diet, there must be an underlying cause, which is not being helped by diet or supplements.

    I do think it is important WHAT your diagnosis is - diabetes for example will be treated differently to Multiple sclerosis and present different problems. IF i had Lupus then i DO need to have my kidney function monitored for example unlike now where everyone thinks i dont need to DO anything because M.E wont kill me. I do understnad that general healthy diet and living and fixing gut etc will help all chronic illness, but there is little point in worrying how mucvh sugar you eat if you have AIDS. but that is very important if you have diabetes. Im not sure but are ypou suggesting that ALL disease can be treated the same way?
  6. xchocoholic

    xchocoholic Senior Member

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    Hi justy,

    I wish I was stuck with dr myhill. Lol.. My integrative doctor is fantastic too tho.

    As far as treating all chronic diseases without specific organ damage the same way .. Yes and no .. Specific diets and specific
    supplements need to be individualized. For example, I have celiac disease genes so
    gluten is off limits permanently. I also have paget's so I have to avoid dairy because it
    causes this to flare and grow .. I have Kidney stones too. My list goes on and on. I really have
    some lousy genes ..

    As far as which supplements a person needs, it just depends on their genes and their ability to
    break down nutrients. This can be hampered by genes, gut damage, gut bacteria or the current status of their nutrients that
    are co-factors. Aminos play a huge roll here providing enzymes, peptides and other aminos.

    Detoxing is important too. Dr mark hyman explains this well.

    I do believe that an organic paleo / low carb / low glycemic diet + specific supplemnts will help eliminate most diseases.
    This is the diet recommended now for diabetes. Are you familiar with the ancestral health
    movement ? I'm a cordain follower myself but this movement is gaining ground in healing
    illnesses. In fact rob wolf is a reformed vegan ..

    As far as a diagnosis goes, I could've been diagnosed with ms based
    on my brain lesions but those are gone now. I was diagnosed with
    ataxia and that's gone too. If you look at theglutenfile, you might
    see this more clearly. The list of illnesses related to gluten is staggering. And that's just what we know now.

    Not absorbing nutrients means gut damage. Celiac has been re-defined
    recently to include more than the celiac section of the intestines. I believe it was dr fine and/or dr fasano who helped with this.

    Tc ..x

    Ps. I need to drop this for now. I just started treating accute h pylori yesterday and
    believe it or not, my family is coming to visit .. Happy holidays ..
  7. justy

    justy Senior Member

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    Hi Xchoc- have a great holiday and thanks for the discussion. Im going to make a concerted effort in the new year to tighten up my regime - ive got really sloppy.
    Happy holidays to you too, i have family coming and am now battling a lung infection. Nevermind, i think all will be ok. I look forward to chatting with you more after the holidays to hear more about your healing (sounds very positive)
    Take care, Justy x
  8. anniekim

    anniekim Senior Member

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    Hi xchocoholic, with what you have written above, are you saying that in your opinion the root cause of M.E/CFS is dysautonomia? Sorry I am not very clear, probably brainfog, apologies.

    Also may I ask what tests you did to diagnose candida?

    Hi Justy, I am sorry you feel your doctors are not testing for other conditions such as lupus etc as you feel you have some of the symptoms. I find GP's daunting, but I would push for testing in the New Year if you feel it's something that should be looked at if only to cross out. It will give you peace of mind to get an answer too.

    I noticed you wrote that you do get PEM, a classic key feature of M.E. You describe it as fatigue, as can happen in other illnesses, but my understanding is the fatigue in other conditions is different to the PEM of M.E. Now i might be misunderstanding and you have other symptoms as well as fatigue when you have PEM, but for me my PEM isn't just fatigue but a flare up of all my symptoms. If I go over my activity limits, I get a sore throat, disordered sleep, tender glands, increased muscle pain, nerve pain and increased brain fog as well as intense exhaustion. This altogether is PEM. Is it the same for you or just fatigue?
  9. xchocoholic

    xchocoholic Senior Member

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    Hi annie,

    To clarify that should've said imho, the reason patients with me are disabled aka bedridden or couchbound, is from dysautonomia. We can't tolerate being upright due to blood loss in our upper bodies.
    Blood loss means lack of nutrients and oxygen to our upper organs. This is hypoperfusion. Dr peckerman wrote about this in me/cfs.

    There was an article on this recently too. It had to do with gauging disability in me.

    Imho, Me isn't cfs. Me is more serious and includes more limitations. It appears to be triggered by a virus or bacteria.

    And imho, me can cause death ultimately due lack of proper treatments in
    the accute phase. For example, I'd be a lot better off if my gluten intolerance was caught before I got full blown celiac disease. And imho, I'd have less brain, heart, lungs, etc damage if this had been treated properly.

    Whether the damage is from gluten or a virus or bacteria or toxin is
    unanswered and something I see being addressed by medical researchers. Providing our bodies the nutrients it needs to heal isn't being addressed.

    Imho, Cfs can be treated with diet and supplements. Detoxing from poor nutrition, nutritional deficiencies, candida, parasites and chemicals is the treatment used by alternative and holistic doctors.

    Imho, The lack of proper medical care, mostly via traditional medicine but not always, is holding us back from healing. Drug companies have turned our mds into drug pushers who simply don't think about
    what they're being told. It's a massive waste of highly intelligent people.

    Tc .. X

    I'm back ..

    Candida was tested via cdsas.

    My pem doesn't include other symptoms. Food intolerances, nutritional deficiencies and toxins were causing those.

    Other people with chronic conditions talk about fatigue for days after exertion, but we seem to have latched onto the idea that it only happens in me/cfs. I think the problem is in our desperation in the me/cfs community for any
    marker that doctors will recognize.

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