International ME/CFS and FM Awareness Day Is On May 12, 2018
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Help with case review: 40 yo female

Discussion in 'General ME/CFS Discussion' started by swepeter, Nov 11, 2016.

  1. swepeter


    Severe ME/CFS woman 40 yo
    Functional Medicine approach
    Short summary of findings
    Nov 2016

    I would be so happy to receive input on this difficult patient case of mine. Most data below is collected during the last two months. I am an MD practicing Functional Medicine, but has limited experience in severe cases of ME/CFS.

    This patient has during the last two years developed a severe form of ME / CFS with fluctuating symptomatology . She is since 6 months lying in a dark room with almost total light sensitivity, virtually blind, and with great sound sensitivity. Somatic function is surprisingly good, but she suffers daily by severe symptoms in the form of a burning sensation inside your head, along the spine and hands. She also has a feeling of heat inside her head (cf. Jarred Youngers ME/CFS research:

    Her resting pulse is approx 100 bpm. She has some pain, but that is not at all dominant. She can walk 400 meters (indoors). Bowel movements everyday, somewhat loose at times.

    She has been under previous investigation with a 9 mm large parietal"tumor" of uncertain etiology of MR brain that appears to be of unknown cause.
    She has also previously been investigated by a neurologist and infectious diseases specialist a year ago. She is currently in the hospital.

    Summary of findings:

    45 blood samples (European units) showed eosinophilia 0.91, CRP 13, SR 39 mm.
    Vitamin D 187 (had taken 20000 IU for several wks). S-PTH <0.2. S-Ca alb standard 2.49, slightly increased. 133. Hb MCV 95.6.
    Na 142, S-K 3.7. T4-free 11, TSH and free T3 5.9 and 5.5,respectively, ie elevated TSH and free T3.

    New sampling: CRP 9, SR 25 mm, WBC 8.3, Hb133, eosinophils 1.20%.
    S-calcium 2.34 (normalized), creatinine 57 (on creatine now).

    Imupro 300 IgG food intolerance testing:
    Showing moderate IgG response against dairy and wheat / gluten, but otherwise not much else. No IgG antibodies against Candida.

    SIBO Lactulose Breath Test 3 hrs: Shows no signs of Small Intestinal Bacterial Overgrowth; SIBO.

    DAO (diamine oxidase that breaks down histamine in the intestines) showed normal values.

    Quicksilver Scientific Mercury Tri-test:
    Clearly but moderately elevated mercury coming from seafood. Mercury from amalgam under the lab's average. Results indicate good excretion of mercury via the kidneys and hair (corresponding to liver).

    Quicksilver Scientific Blood Metals:
    High levels of copper, magnesium, selenium, zinc. Low levels of manganese and calcium (can point to low HCl). Adequate levels of lithium and molybdenum. High levels of arsenic, cobalt (from Vitamin B12?), Silver (taking colloidal silver?) and elevated levels of lead and mercury.

    NutrEval multi-test: The test indicates the following:
    Large lack of vitamin C, alpha-lipoic acid, vitamin B2, biotin. Shortcomings also in other antioxidants, vitamins B1, B3, Manganese, Zinc.
    The test recommends probiotics and supplementing with pancreas enzymes.
    Clear signs of overgrowth of Candida and bacteria in the intestines. (DHPPA> 19.6. Arabinose 118 mmol/mol).
    Signs of high intake of 5-HTP (5-HIAA> 74.7).
    Noradrenaline> dopamine (VMA high, HVA normal)
    High levels of ammonia in the urine (74.3).
    Increased intestinal permeability? (1-Me-His 1588).
    Fatty Acids: GLA nonexistent.
    Omega6 / 3 ratio good: 1.7.
    Glutathione in blood, very low (480).
    High oxidative stress (lipid peroxides: 12.9).
    Mercury elevated (0.0072).
    Manganese low.
    Copper bit higher than zinc.
    Selenium ok.
    Homocysteine 4.72 in urine (about 7 in the blood before; heterozygous for CBS, see below).

    Great Plains Urine Organic acids.
    Elevated arabinose (72) pointing again to Candida overgrowth.
    DHPPA high, bacterial imbalance. High oxalic acid (probably due to high vitamin C intake, may also be due to Candida overgrowth).
    High succinate, due to a lack of vitamin B2 or Q10.
    Ascorbate high (high vitamin C intake).
    Vitamin B6 is low.
    5HIAA high (due to high intake of 5-HTP).
    High ethylmalonate may indicate a lack of carnitine.
    Vitamin B5 is low in urine.
    2-hydroxy isovalerate high, can show a lack of vitamin B1.

    Great Plains urine TOX:
    No really high values for any compound. Moderate increase of some substances, that can come from Xylene and organophosphates (pesticides), probably from impaired detoxification function.

    "MethylGenetic Nutrition Analysis" (based on 23andMe data;
    Should be interpreted with a large pinch of salt, these are genes, not function!
    GSTP1 + / + (glutathione S-transferase P1 impaired?)
    GSTM1 - / -
    SHMT2 +/- (low glycine?)
    CTH + / + (low cysteine production? Needed glutathione manufacturing)
    DHFR + / + (reduced folate production?)
    MTRRs +/- (B12)
    PEMT 33% efficiency (choline deficiency?)
    BHMT-08 +/-
    CBS C699T +/-
    MAO A + / +
    COMT +/-
    GAD1 +/- (glucose> GABA impaired?)
    GLUL +/- (Glu + NH3> Gln impaired?)
    Peroxynitrite-reduction 53% efficiency
    CPS 61% (NH3 + bicarbonate> carbamoyl phosphate impaired?)
    OTC 75%
    Ass1 63%
    ASL 67%
    ARG1 100%

    Precision Analytical DUTCH Complete Hormone panel: High free cortisol (especially afternoon and evening). Low estrogen, adequate progesterone, testosterone in higher normal range.Low methylation (COMT).

    • Main findings of the above samples is in my opinion a very low level of the body's most important antioxidant glutathione in the blood and a high oxidative stress.

    • There is a great need for antioxidants (eg, glutathione, vitamin A, C, E and alpha-lipoic acid).

    • the genetic test showed some bad gene variants of the enzyme which is important in the synthesis and use of glutathione (GSTP1 etc.).

    • Mercury (from fish) is moderately elevated, which contributes to oxidative stress.

    • The samples indicate overgrowth of candida and probably an imbalance in the intestinal flora.

    • Slight elevation of SR, CRP and eosinophilia investigated in hospital.

    • An elevated level of ammonia in the urine may be paired with an elevated level in the blood, but this can only be measured in a hospital. Ammonia is neurotoxic.

    • Moderate increase of toxins in the form of residue from xylene and organophosphates.

    Our treatment the first 2 months have at various times, sought to reduce ammonia, raising glutathione, strengthen the immune system, treat Candida, increase mitochondrial energy production, provide extra antioxidants and improve digestion. This has not been successful.

    We stopped all supplements when patient was hospitalized but are adding in a few now.

    I believe treatment should be directed towards neuroimmunity and glutamate overactivation. But what are the best and least expensive bets?

    Any suggestions based on publications or experience?

    Thank you!
    Invisible Woman, Joh and helen1 like this.
  2. swepeter


    Bumping this thread to see if there is anyone that would give some input? Anyone that could direct me to information how to mitigate microglial activation? All responses are valued.
  3. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

    Hi you might not get many responses to your request for help because it's against forum rules to give medical advice.

    I happen to think it's actually really good that you would be asking for help on this site, because the people here know more about this condition than the vast majority of doctors, so I hope you get a response (other than mine!).
  4. swepeter


    Thanks GreyOwl, I have understood that medical advice is not accepted here. I still hope to tap into your heads to get some hints on where to find credible and adequate info though.
  5. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Some time next year there will probably be a metabolite test available in California using mass spec.

    We are currently in the situation where the science is advancing fast but there are no really good treatments that are approved everywhere.

    Some of us do improve a lot under various treatments, but its important to realize that none of these work for everyone. Such treatments are discussed over much of this and other sites.

    Microglial activation and possible treatments have been discussed a few times on this forum.

    I wish I had good answers. I think functional medicine will be very important in a decade or two, but the tests and science that lead to that are still in development. Its a work in progress, and a better choice for most of us even now.

    We have what I am coming to call a complex chronic disease. Most doctors do not have the training nor inclination to deal with that. I am glad that you do.

    May I suggest you find individual discussions that look fruitful to you on this forum and other places, then start asking more specific questions? We have doctors, researchers and other scientists here who have an interest, but most of us do not deal with detailed patient histories much, other than our own.
    SuzieSam likes this.
  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Dear @swepeter

    As indicated above, there is rule here not to give medical advice. Normally requests come from patients. You say you are an 'MD' but your description of the case is not the way a physician would present it. It gives the impression of your being completely out of your depth in terms of diagnosis, pathology, basic science etc. My impression is that the best you could do would be to admit to the patient that you have no idea about the illness and would advise someone else manages their care (if indeed you actually are a physician).

    You mention a 9mm parietal lesion. Without more information on what has been decided about the nature of this and a full neurological work up I think there is little point in analysing the case. If the 9mm lesion is the cause of the problem that needs sorting. If it is not you may well just have a case of ME/CFS. But directing treatment to 'neuroimmunity and glutamate over activation' is completely meaningless. Patients with immunological and neurological disorders need to be treated by physicians with adequate expertise in those fields.
    Mij, justy, Butydoc and 2 others like this.
  7. Valentijn

    Valentijn Senior Member

    The manner in which SNPs are mentioned would also indicate a lot of misinformation and a resulting lack of understanding. To be blunt, the patient needs a real doctor, not someone who is buying into every fad they come across. Please don't attempt to "treat" SNPs or use them to explain anything until you understand the research into those specific SNPs and their actual impact.

    I'm in the Netherlands, and to the best of my knowledge there are no ME/CFS experts in the country who are actively treating patients. Some of us see Dr de Meirleir in Brussels for testing and treatment, though of course that is not financially or logistically possible for some.
    alex3619, Mij and Butydoc like this.

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