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Parents making me get psychologically assessed, need ideas for dealing with this

Discussion in 'General ME/CFS Discussion' started by overtheedge, Sep 8, 2017.

  1. overtheedge

    overtheedge Senior Member

    My parents have been nice enough to let me live in their home for years while I have been sick, letting me try my own things, which have slowly led to improvements in my illness, but now they are essentially forcing me to get psychologically assessed as they are convinced my illness is at least partially psychosomatic. I can't reason with them and psychologists haven't helped me in the past except with sleeping pills. My parents are dogmatically into mainstream medicine and had me on stimulants for ADHD for years which I suspect is what caused my ME in the first place.

    What should I do to deal with these doctors and convince them I am fine on a psychological level? I figure either through my parents telling them about my illness or the doctors asking about what I do for a living I will have to tell them something about the illness I have but I don't know what I should say to get away from them without being branded crazy and having to attend something for it. I might even be sent away to a facility to be "cured" of psychosomatic illness, probably without my supplements which have been helping so much, and having CFS would make dealing with such a scenario a nightmare even if I did have my meds, but if I don't somehow get this out of my parents systems I'll be kicked out which would be an even greater nightmare.

    I'm figuring on showing up to the assessment clean shaven and looking in a way that won't let them form any preconceived notions that I am an unstable person but beyond that I don't have many ideas on how to beat their tests in a way that would get me off the hook with my parents.

    Any help would be appreciated
  2. Dainty

    Dainty Senior Member

    Hey @overtheedge ! Man, that sounds scary. Where are you located? Some countries tend to be nicer about this sort of thing than others, so knowing which one you call home will help us to advise you.

    After reading your concerns, I went and dug up I post I wrote 7 (!) years ago. When applying for SSI, they sent out a psychologist to evaluate me. The first one they sent out was awful, so I reported her. The second one was amazingly awesome, said I was doing a great job and he doesn't even know why he was called out there. :D

    I have heard of people who have a good psychologist who tells them "I don't know what is going on healthwise, but it's clearly something physical."

    Bottom line - there's always a risk you'll get a bad one, but there's also a chance it can be a good one. I don't see any need to "beat their tests" - I think if you're just honest and forthright you'll pass with flying colors. :)
    Richard7, boombachi and AnnaDove like this.
  3. TigerLilea

    TigerLilea Senior Member

    Vancouver, British Columbia
    If you aren't a minor, how can your parents force you to get an assessment?
  4. Woolie

    Woolie Senior Member

    You mean psychologist or psychiatrist? In most countries only a psychiatrist can prescribe you sleeping pills. But I think the rules are a bit different in the US?

    If you do see a psychologist OR psychiatrist, then anything you disclose to them is confidential. So go along, but make sure the therapist knows that you do not give permission for any disclosures about the content of your sessions, or diagnosis, or therapists conclusions about you, none of it.

    It doesn't matter who's paying, they still have to keep your sessions confidential unless it has been expressly stated otherwise and you have consented.

    Then you report to your parents only what you choose to report about the sessions.

    I think 90% of therapists will believe your problem is at least partly psychological. Its part of their framework. Many will be good at concealing their views from you too. So even if the person seems on 'your side', I would not allow them to communicate directly with anyone else about your case, except you. You should have full control of what's disclosed about you.
  5. trishrhymes

    trishrhymes Senior Member

    I'm sorry you are in this difficult position. I can see that you are caught between your need of the home and care your parents provide, and now they seem to be making this conditional on you going for psychological assessment.

    I agree with @Woolie about making it clear to the psychologist that you wish the outcome to be confidential.

    One suggestion I've come across that makes sense to avoid being diagnosed withe depression - emphasise that there are things you long to be able to do, but that your physical disability is holding you back. You could describe occasions where you have started something you really wanted to do, and enjoy, but have been unable to complete because you became too ill.

    Also you could describe the treatments you are trying that are helping and all the effort you're making to try to get well. And try to stay calm and reasonable.

    I hope you are lucky and strike a good one. If you have any say in who you see, I wonder whether anyone here could suggest good ones in your area who understand ME.

    Best wishes.
  6. maybe some day

    maybe some day Senior Member

    San Francisco bay area
    Its so hard when you have to prove your illness. Its bad enough to wake up with it every day. Maybe show them this forum, educate them. If your primary dr is on your side, have your parents talk to him/her. An assesment will show your fine, but it maybe an up hill battle with your folks unless they get educated. There are plenty of youtube video to show them... some come to mind are Ted Talk- Jen Brea, and whitney dafoe's struggle.
    Tammy and Woolie like this.
  7. TrixieStix

    TrixieStix Senior Member

    I assume the "force" comes from the fact this person lives in their parent's home thus they have leverage over them in that respect.
    Joh, sb4, Dainty and 4 others like this.
  8. lauluce

    lauluce as long as you manage to stay alive, there's hope

    do as myself, take 48hs ours CPET and show them how you muscular-cardiac-aerobic capacity drops for 24 hs after a simple 10 minutes of excersice, which is impossible to explain by psychological theories
  9. JES

    JES Senior Member

    Have your CFS been diagnosed by a doctor? I figure in your current situation, it would maybe be a useful first step to obtain a CFS diagnosis. While we know that mainstream treatment for CFS/ME in many places is still these useless CBT/GET therapies, at least it's now widely acknowledged that CFS is not a psychosomatic disease. Even most CBT/GET proponents have now muddled their stance to "they don't think CFS is all in the mind", but they claim these treatments are useful anyway. So having a CFS diagnosis means pretty much you don't have a psychosomatic disease, and it may also help your parents to understand you better.
    Woolie, Learner1, Wonko and 1 other person like this.
  10. Learner1

    Learner1 Forum Support Assistant

    Pacific Northwest
    As long as you're being psychologically assessed, I'd say you need an equal number of hours in front of a doctor bring thoroughly assessed.

    Since you'd be doing tests, it would be equally important to test:

    - immune function - immunoglobulins, NK function, cytokines, antibodies (CellTrend, Mayo) as well as testing for infections like atypical pneumonias, herpes family, and any other things you were exposed to in the past

    - endocrine function - full thyroid panel with antibodies, saliva adrenal cortisol and other adrenal and pituitary tests and sex hormones including DHEA and pregnenolone

    - neurological testing - including brain MRI and testing for cerebral spinal fluid abnormalities

    - digestive function - stomach acid, pancreatic, gall bladder and liver function and DNA stool test for microbiome abnormalities, candida, and parasites

    - toxicity - mold, heavy metals

    - nutrient status - Genova Diagnostics NutrEval FMV with Amino Acids

    I can't imagine some real medical problem won't show up if you have the above tests run (unless, of course, you are making it up and just lazy :bang-head:)

    Good luck! :hug:
    Last edited: Sep 9, 2017
  11. overtheedge

    overtheedge Senior Member

    Whoa, thanks for all the support dudes
    The psyche was cool and believed me about my illness and so I got off the hook

    My parents have seen all the evidence and still don't believe me, I've tried again and again to convince them, my functional medicine doc explained the situation to them at one point and my aunt who is a doctor did so too.

    I've done many of these, the results:
    from the herpes family have found chronic reactivated EBV, with the exception of beta glucan no immune focused supplements make me feel better though I did try some foreign med called retrovir which made the EBV no longer show up as chronic reactivated on test results but didn't do anything to improve my energy.

    thyroid is normally normal but on my last test was hyper, my doc had me take a lot of iodine for a while, wonder if that is why

    saliva cortisol came up essentially normal on my most recent test. DHEA was low normal and i'm starting supplements soon. pregnenolone i supplemented for a month or more without results

    have had the standard liver function and gallbladder tests, biliruben is occasionally high but that is about it

    Have had toxic metals tested, hair tests always come up with extremely high copper levels but this never responds to any of the standard copper lowering supplements, I've wondered these years if maybe it has to do with the light brown color my stools always are maybe indicating some lack if bile flow, bile being the primary way copper gets let out of the body, however, my stools arent excessively pale and are never greasy so maybe I'm completely off but I don't know.

    Urine challenge tests have shown mercury and lead at uncomfortable levels which I reduced through months of IV chelation with EDTA

    I've had an amino acid test done, studied the interpretation guide in detail but couldn't find anything too significant except that it indicated muscle wasting

    Tell me about atypical pneumonias if you would, I'm not familiar with such, have had a cough and nasal congestion that wont go away since around a year after coming down with CFS, could that be related?

    I'm also unfamiliar with the neurological aspects, what is the rational behind brain MRI and cerebrospinal fluid, what is to be looked for and what remedies are available?

    stool tests covering all of those has been done through genova, always comes up with a different serious pathogen every time i run it after having done the rounds of antimicrobials after the previous stool test, never any parasites, have done all kinds of antifungals in case of candida without results, occult blood always shows up in stool. Stools are always light brown in color. My current thinking is that the problem is in my gut, In the past I became well shortly after getting over chronic constipation by taking stomach acid and digestive enzymes, at least, I think that is the reason.
    What I think is at least partially responsible for the most recent CFS I've had is in part the way I ramped up the dose of Betaine HCL right beforehand, I had read that it was best to increase the dose until you feel gut burning then decrease the dose a little but I kept increasing until I was up to nine tablets then started feeling really strange tingling all over and within a week or so I could no longer work, although, my energy had been driven really low already from working otherwise I never would have tried such a thing as I was desperate to get well enough to start working more than just part time and to feel good and have energy but I think the HCL at least played a part, since then whenever I try even a little betaine HCL i will get gut burning a few hours later.

    I've tried all kinds of gut focused things:
    Aloe Vera
    Glutamine at 5g's per day
    several types of probiotics
    lots of antimicrobials
    various berberine products, berberine at first made me feel really good and turned my stools a normal brown color but would cause gut burning after several hours, I did a test and the pH of the berberine tablet was neutral so it had to be something it was doing. After those first few days though I could never get anything from those berberine tablets or any of the other berberine products I tried
    slippery elm
    marshmallow root
    digestive enzymes which I still take cause they normalize my chymotrypsin levels on stool tests
    DGL which corrected the chronic constipation that came with the latest CFS which has been a great help
    N acetylcysteine, it has antimicrobial effects on the gut beyond its liver funcitons which made me feel real good the first month of use then stopped working
    Mastic gum made me feel great for a while then stopped
    Food allergy diet
    powdered nutrients make me feel good for a while but then each type stops doing so and I have to switch to some other type, wonder if this indicates malabsorption or something
    pumpkin seeds
    artichoke hearts
    digestive bitters
    Ghee butter makes me feel a bit better but never seems to cause any progress to occur

    My best guesses as to what to do are to try taking in nothing but IV nutrients for a week, bypassing the malabsorption I'm pretty sure I have and giving my gut a chance to heal itself or maybe I should try taking betaine HCL again but with antacids taken an hour later to neutralize the acid after it has done its job helping the stomach since the burning always comes hours after taking the HCL when the food should be in the intestines
  12. Woolie

    Woolie Senior Member

    Thanks for updating us, @overtheedge. Glad it went as well for you as could be.

    I'm sorry about your parents' attitude to your illness. Its not that uncommon, actually. I think many families find denial easier to cope with than facing the idea their child has a disabling and incurable illness.
  13. A.B.

    A.B. Senior Member

    I suspect it's common but rarely talked about because it's so dispiriting for all involved parties.

    The families and relationships where patients are supported and there is harmony despite the suffering are usually the ones shown.
    Woolie, Joh, erin and 1 other person like this.
  14. ukxmrv

    ukxmrv Senior Member

    It's probably time to bring in the big artillery and get someone with authority to talk to your parents if you can. You have used a functional doctor and your aunt but they obviously don't accept their "authority".

    My suggestion would be to present this back to them as a problem of their making. You say that they have been "nice" enough to let you live in their home but that is their job. You have a right to be there and for your family to support you when needed.

    Your family should be using their resources not only to support you financially but to actively find a cure or help for you. For some reason it sounds as if they have turned against you. This may be a pre-existing attitude or someone is influencing them.

    I know of a young man with ME who had a doctor father. The father couldn't cope with a son with ME as he had been taught in medical school that this was a psych condition. The father abandoned the son and left the family. In my own family there was a member who had weird new age type beliefs on illness . They tried to influence other members. What I had to do was get my Mother to see a family counselor with me to explain the abuse I was receiving and then get allies from my siblings to fight this.

    If your parents believe this is at least partly psychosomatic and want you assessed then they have money I guess? You could insist that you see one of the ME doctors from a major hospital or university that would maybe appeal to their authority beliefs or from a "known good" psychologist that is trustworthy.

    I've had 2 psychological assessments over the decades. One was from a local hospital that had one of the early ME researchers working there. The assessment was fair and reasonable. The 2nd was enforced by an insurance company after a road traffic accident. I saw one of the "malinger's witch-finder" type and to my amazement got a fair assessment. It can happen but why risk it. Try and get the best possible person (i.e. knowledgeable and fair) if you are still forced to do something.

    Hope this helps. Really sympathise with your position.
    garcia, Woolie and overtheedge like this.
  15. Learner1

    Learner1 Forum Support Assistant

    Pacific Northwest
    You're welcome. With what you've shared, you definitely have a medical problem.

    Can you get them to watch any of the OMF Symposium video? Or read the IOM report?

    9 years ago, an immediate family member got a serious mental illness (BP2, PTSD, BPD, and ADHD). 22 doctors and 9 psychiatric drugs later, a naturopathic doctor cured this patient, who had celiac disease, multiple food allergies, leaky gut, nutrient deficiencies, and biochemical imbalance. I learned that psychiatric problems are medical problems and can be cured, not with psychiatric drugs (most of which damage mitochondria) but by addressing the underlying medical problems.

    In your case, your issues seem more complex than this, and though you've done some good things, it just hasn't been enough.

    EBV is insidious. Have you had a recent VCA or PCR test? You never really get rid of viruses, and they can stay in the background and reactivate. The typical EBV tests didn't find mine, and there is literature saying that this can happen so make sure you and your doctor are 100% sure its not the problem, because it alone can do a lot of damage.

    Have you also been tested for HSV1 and2, zoster, CMV, HHV6 and HHV7? And any other viruses, depending on your travels and what's common where you live (Ross River, Cocksackie, etc.)? Enteroviruses in your stomach?
    Were you tested for reverse T3 and TPO and thyroglobulin antibodies? Are you on a gluten free diet?

    Pregnenolone can help brain function. Having your hormones balanced properly can greatly increase function, however, its not the whole problem here.
    From what you've described, likely your liver, and possibly your gall bladder and pancreas aren't working properly. This can be very serious. This article gives some explanation:

    Getting rid of heavy metals is important. However, chelation must be done carefully, replenishing minerals you need, and with support for glutathione production and transsulfuration pathway so that the metals are mobilized and get all the way out of your body without getting reabsorbed.

    You sound relatively young. Why were you that toxic? Do you live near polluters, ingest polluted food or water?

    Or, might you have a bunch of methylation SNPs - genes that aren't working as well as they should and compromising your ability to detoxify? MTHFR, MTR, MTRR. BHMT, CBS, GST, PON1, and NAT2 are a few examples, but there are several others, too. A 23andme test could help you figure this out. Knowing might help you understand tendencies to be short of various B vitamins, amino acids, and minerals like magnesium and molybdenum, which are important these processes

    If copper is high, its likely you need more zinc. Maintaining a good ratio of these is important. Also check status of all minerals - you could very well be short of something minor like manganese, chromium, vanadium, etc.

    Supporting the liver with milk thistle, curcumin, artichoke, B vitamins, etc. is important, as is correcting gall bladder and pancreas function.

    Being on a Paleo diet, eating dandelion greens, taking digestive bitters, artichoke. curcumin and milk thistle may all help. This is a sensible overview:

    Healthy liver and gall bladder function are essential to good health. Left alone may leave you vulnerable to various cancers. Not to be an alarmist, but I'm a cancer survivor and learned a lot about it on my journey.

    You need s good doctor to help you. Also, you could possibly have an infection in your liver, which filters everything in your body. Worth figuring out.
    Which aminos were very high or low? Could be significant.
    Bingo! Yes, its quite likely from what you've said that you have one or more chronic infections, possibly along with immune system dysfunction.

    Have you had immunoglobulins with subclasses checked? NK cells? Cytokines?

    Have you been checked for Lyme disease?

    Common atypical pneumonias are chlamydia pneumoniae and mycoplasma pneumoniae. They're difficult to kill as they take up residence in your cells. They can make you quite sick. Garth Nicolson has written dome about these infections and the Connell website tells a lot about chlamydia pneumoniae, which tends to make people very deficient in B12 and other B vitamins.

    I've had sinus issues for years with not much help from MDs.

    I finally found out I have both c. and m. pneumoniae and a few viruses and am on a comprehensive nutritional support program and NT Factor for my cell and mitochondrial membranes. I had some luck with oxygen therapies and tried botanicals like artesunate/artemisinin, berberine. Banderol, and samento, but it wasn't enough as my immune system is dysfunctional. I'm now on IVIG, pulsed rotating IV antibiotics, and a strong antiviral and an improving.
    If you do have brain symptoms unexplained by the above, you might have an infection, tumor, or MS in your brain. The MRI might identify these and the CSF tap might fund infections or abnormalities. Treatment can vary depending on your issue.

    Finding such a problem and treating it is preferable to needlessly prescribed psychiatric meds.

    But, given what you've described, your problem are likely in your digestive system and infections and their damage, so the main thing you may want to investigate down the road is infection. But likely not the first place to start.
    All this sounds good. Are you celiac or what got your gut out of whack to begin with? Compromised guts tend to be a great breeding ground for parasites.

    Given your issues, you should try a gluten free, grain free, Paleo diet for at least a few months. Try avoiding dairy and soy, too, Which can be gut irtitants, and anything with RoundUp involved in its growth.

    Try a DiagnosTechs or uBiome test to see what bacteria are in your gut and work on optiminizing pre- and probiotics to cultivate healthy diversity in your gut.

    Look into Xymogen, PrescriptAssist, Symbioflor, Mutaflor, and Equilibrium probiotics. Start slow and rotate them. And repeat stool tests every 3-5 months to check progress.
    You've done some goods things.

    I suspect its diet and microbiome composition. Find and remove all food allergens. Might be something you've missed.
    Find out what's in your gut and keep working to improve composition and diversity. Work on prebiotics - Thorne Fiber Mend and Seeking Health GOS are 2 good ones. Eat lots of vegetables.

    The Foood intolerance Bible by Anthony Hayne is a good general resource with lots of self quizzes and resources.
    I wouldn't take an antacid...back off on the Betaine if needed. Do you know for sure you have low stomach acid? Seems like you have enough problems downstream to work.

    Finding and treating nutrient deficiencies is wise, IV or sublingual or transdermal. Top priority should be getting your liver and gall bladder working. Then finding infections and checking immune function.

    Sounds like you've had access to a decent doctor. Work with them to get through this most efficiently

    You're asking good questions...hang in there!

    DISCLAIMER - I'm not a doctor, etc. etc. Juust a patient and caregiver who's learned a lot of hard lessons along the way. You'll need to work with an experienced medical providers follow through with your own research.
    Last edited: Sep 14, 2017
    overtheedge likes this.
  16. skipskip30

    skipskip30 Senior Member

    Unfortunately that's true. While I'm lucky personally I've had friends with parents like this. I'm afraid I can't really describe my feelings on it without swearing profusely!
    Woolie likes this.
  17. JES

    JES Senior Member

    @overtheedge Thanks for the update. It sounds like you've tried most supplements available to improve your condition. I share your idea that the gut is probably one of the main potential problems. Like you, I have gone through all the most relevant supplements, and I usually notice that any given supplement stops working within a few days to max a week. This seems to be common in this disease and it's hard for me to understand the logic behind it.

    One thing you might want to test is high dose vitamin C, preferably IV. If you can't get IV, liposomal version achieves about 30% higher plasma levels than non-liposomal. Vitamin C reduces EBV antibody levels considerably during sustained treatment (source). The article was based on IV administration, but I think it's possible that liposomal achieves some degree of effect as well. As a bonus vitamin C also chelates copper, which I understood you had a problem with.
    Last edited: Sep 14, 2017
  18. overtheedge

    overtheedge Senior Member

    @JES I've had IV Vitamin C without results, have thought about liposomal Vit C but haven't gotten round to it

    @Learner1 What did your family member use to cure those conditions, I'm always interested in hearing about people who beat this thing

    I don't remember what sort of test it was that was used to find EBV, four antibodies were tested, it has been a while since Ive had one done.

    Of the other viruses you mentioned only CMV have I been tested for, it came up negative. If those others came up positive what would it mean? Would it indicate a need for rounds of some antivirals?

    I have been tested for reverse T3, TPO, and probably for thyroglobulin antibodies, think I had one other antibody specific to the thyroid tested as well, they are negative every time I test them

    I have tried a thorough allergy diet for over a month without any results and haven't excluded grain since

    Every fourth IV my doctor gave me wouldn't be chelation but rather vitamins n minerals to replace what might have been lost, kidney and liver were monitored through blood testing as well

    Just found out my GSH levels are low, been taking methylation supplements but, while they were enough to lower my high homocysteine they havent done much for my GSH so i'm starting to supplement reduced glutathione and plan to retest in a few months. On a side note, there were other things on that same test I ran that interested me, specifically, low CoQ10. Hopefully I'll get some good results by getting my CoQ10 high normal.

    I don't know if I live near toxic stuff but I think the cause of my illness is the ADHD meds I took for many years as a kid, when I was on them I developed photosensitivity, paranoia, occasional insomnia, and a shy withdrawn personality when I was formerly outgoing. I wouldn't have bowel movements on days where the pills were taken and the constipation became chronic and didn’t go away till I started betaine hcl w/ enzymes years after stopping the meds. I also developed strobing behind my eyelids and visual distortions like TV static that still haven’t gone away. Also, on the days I took those pills I wouldn’t eat lunch because of lack of appetite which can’t have been good for me, and, in addition, my energy was just generally low when on those pills, couldn’t really think straight either.

    The other thing is that I inhaled a lot of fumes from burning plastic shortly before my CFS became something much more severe than it had ever been before. So I need to find a way to test for/detox that.

    Have checked out my genes w/ 23andme and genetic genie, delt with that using a bunch of methylation supps, probably has improved me some but not enough. Definitely was worse though before I started with the doctor who set me up with those methylations supps but I was also doing her other treatments like the chelation, zinc supplementation, testosterone boosting using a herbal supplement, and others so I can't say what did it for me

    I supplement zinc a good bit, plasma zinc is always low on tests unless I'm supplementing and I have tried to correct deficiencies where I found them without luck

    I've tried all of these:milk thistle, curcumin, artichoke, B vitamins; no luck unfortunately

    I've never heard liver infections mentioned before. What would be a good way to detect and deal with them?

    About amino acids, my BCAA's and methionine were borderline low, I supplemented for over a month without results. Amino's that were high: Arginine, Threonine. Amino's that were borderline high: Lysine, glutamine, 3-methylhistidine. Amino's that were low: Ethanolamine, phosphoserine. Amino's borderline low: Urea, Tyrosine. I supplemented tyrosine also without luck.

    NK cells are fine, never checked immunoglobulins or cytokines but have supplemented IgG for my gut without results.

    Lyme came up negative.

    Man, that sucks having lots of infections, hope treating them gets you well for good.

    No celiac, I've been tested.

    I've tried the xymogen probiotics and a bunch of others without any overt symptom improvement, currently I'm using S. Boulardii based ones, a beneficial yeast, can't tell if it is working but I'm still taking em.
    Lookin over my stool tests I see that my lactobacillus came up as nonexistent while the other beneficial bacteria, Escheriachia coli and bifidobacterium came up as high as possible so I suppose I should try and balance those out. These are from a Genova lab's Comprehensive Digestive Stool Analysis

    I was pretty thorough with limiting food allergies during that month plus I did it, it was even a rotation diet just in case I had some weird sensitization going on.

    I don't know how my stomach acid is doing but since it was central to my getting well the first time I had a serious remission from CFS and might have had a lot to do with my getting CFS again when I supplemented too much I figure it is a fairly important thing in my case so adjusting it up or down might get me good results.

    I've collected all the gut focused tests from my notes, those that I haven't taken yet anyway, I'll post them here for those interested; hoping one of them will be enlightening for me:
    Gastro esophageal duodenoscopy

    Stool elements test(to see copper level)

    Occult blood in stool test from GP

    Bile acid test to investigate pale stools

    Gamma Glutamyl Transpeptidase: this test is a sensitive indicator of hepatobiliary diseases (obstructive jaundice, intrahepatic cholestasis, or pancreatitis). Is also used as an indicator chronic and heavy alcohol abuse. Are our: zero – 65 IU/L

    5'-nucleotidase: abnormal levels on tests may indicate impaired bile flow.

    If occult blood shows up again: Repeat positive results should be followed up with other diagnostic procedures such as protosigmoidoscopic examination, full colonoscopy, barium enema, or other examinations

    Malabsorption occurs when IGA levels are below 60 mg/dL this is why it is critical to test for IGA levels. When levels are low not only will oral hydrocortisone or synthetic substitutes like prednisone on prednisolone fail to be absorbed but also dietary nutrients in chemotherapy will fail to be absorbed as well and the patient's condition can be expected to worsen when IGA levels are low. injectable hormones/steroids and other injectable drugs are used to bypass the intestines. Thyroid supplements are given to increase and restore normal IGA levels as well as improve other thyroid functions. When IGA levels return to the normal reference ranges injectables can be discontinued and the oral supplements will be absorbable and provide effective treatment.

    Small-bowel x-rays (eg, small-bowel follow-through, enteroclysis) can detect anatomic conditions that predispose to bacterial overgrowth. These include jejunal diverticula, fistulas, surgically created blind loops and anastomoses, ulcerations, and strictures. Abdominal flat plate x-rays may show pancreatic calcifications indicative of chronic pancreatitis. Barium contrast studies of the small bowel are neither sensitive nor specific but may show findings suggestive of mucosal disease (eg, dilated small-bowel loops, thinned or thickened mucosal folds, coarse fragmentation of the barium column). CT, magnetic resonance cholangiopancreatography (MRCP), and ERCP can establish the diagnosis of chronic pancreatitis.

    small intestine biopsy through endoscope

    To diagnose bile acid malabsorption, which may occur with diseases of the terminal ileum (eg, Crohn disease, extensive resection of terminal ileum), patients can be given a therapeutic trial of a bile acid binding resin (eg, cholestyramine). Alternatively, the selenium homocholic acid taurine (SeHCAT) test can be done. In this test, 75 Se-labeled synthetic bile acid is given orally and, after 7 days, the retained bile acid is measured with a whole-body scan or gamma camera. If bile acid absorption is abnormal, retention is less than 5%. Achlorhydria may also be detected by measurements of extremely low blood levels of a digestive enzyme called pepsinogen A (PgA). A PgA level of less than 17 mcg/L would be suggestive of achlorhydria. / Stomach acid is important in liberating minerals from food, thereby increasing the risk that individuals with hypo- or achlorhydria will develop calcium and zinc deficiencies. Loss of acid production may also alter the rate or extent of drug absorption. (investigate this to see if it can register hypochlorhydria and make sure that it is a good test for achlorhydria)

    if a scope of the stomach comes back positive check these out:

    We need the correct gut pH to balance and maintain intestinal flora. I am now advocating that everyone in this forum be tested for Autoimmune Atrophic Gastritis.The Antiparietal and anti-IF antibodies test is a simple easy blood test you can have done by your primary care physician. I'm also recommending the Endoscopy procedure for people with a history of H.pylori infection and hypothyroidism. (check these to see if anything can be done if test results are positive or not)
  19. Learner1

    Learner1 Forum Support Assistant

    Pacific Northwest
    I also did sustained high dose IV vitamin C for 2 years, first with my cancer treatment (successful), then for my infections. It helped, but wasn't enough for the infections, as my immune system was too broken to work.
    Finding celiac and allergies to milk, eggs, fish, and coffee. Healing the gut. Righting zinc/copper imbalance. Lots of methylation supplements. Amino acids. Algae- based omega 3s. Supplements like inositol, CDP-choline, CoQ10, and acetyl-l-carnitine.
    Define "negative." I had several doctors look at my results and say they were negative, as I mainly had high IgG titers and no IgM. And the standard 4 EBV testes were negative on several occasions.

    However, IgM is high with an acute infection, which I'd had years before, and my high IgG titers fit the latent, recurrent, chronic version. My naturopath correctly identified these and we tried energy natural treatment we could with some success, but we chased them for several months as they kept coming back. My liver numbers were high, too, serum ferritin, AST, and ALT, which have improved with treatment for the infections.

    I looked locally for an immunologist, but couldn't find one, but found a ME/CFS expert and flew 2 states away to see him. He looked at my titers and said "I know what we were taught in med school, but you are very ill with these infections." He found the EBV which had been hiding - research says there are people like me that don't respond normally to the standard tests. I had high VCA and PCR.

    He measured my IgG subclasses and found low subclasses 1 and 3 which fight bacterial and viral infections, common in ME/CFS patients. At that point, my total IgG was at the bottom of the normal range, though it later dropped 150 points and was low, too. My other immunoglobulins were low normal.

    EBV, HHV6, and chlamydia pneumoniae are nasty bugs. They fo a lot of damage and are hard to kill. The doc thinks they caused the adrenergic antibodies that have given me POTS and the muscarinic antibodies linked to ME/CFS.

    Having an immune system that couldn't fight was keeping me sick and causing a cascade of health problems no matter what wonderful natural treatment I tried. I will say, I don't look sick, and I'm more functional than I should be given how sick I am, so the sizes and supplements have helped my body cope with the ongoing battle and kept me out if bed or a wheelchair.

    I just needed to add bigger guns to the program. I'm taking antivirals, IV antibiotics (the bugs just laughed at the oral versions while screwing up my gut) and IVIG - immunoglobulins from healthy people to boost my immune system.

    Given what you've shared, its be wise to really look and see if your immune system works and be thorough about seeing if you have any sneaky hidden infections.

    It sounds like your gut is an ongoing problem. Identify any current food intolerances and avoid them. Leaky gut can cause undigested food particles to get into the bloodstream, where the immune system. learns to attack the unexpected invaders, giving you food intolerances.

    How did you find you weren't celiac? A lot of times it can be missed - even with a biopsy and standard blood tests only look for some antibodies. You might look into a Cyrex test which tests for call the various gliadin antibodies. They have some good cross-reactive good testing, too.

    Or, you can be on a Paleo Diet and avoid grains altogether. Everyone in my immediate family has a gluten problem, but I'm also allergic to corn and quinoa and my child is also allergic to rice. We've found grains are not our friends - they mess up our guts.

    Given your history, its likely there's at least one good in your diet giving you problems. Likely more.

    Its challenging to figure out, but the cost of not doing so messes up your gut, makes you nutrient deficient, promotes inflammation, tikes up your immune system, and keeps you sick.
    That sound sensible. ;)
    You don't seem to be using your aminos to make GSH - glutamine, glycine, and cysteine aren't low. On the other hand, are you using it up too fast or not recycling it well?

    Fighting infections can use up glutathione, so that may be a clue. Taking IV or liposomal glutathione may help temporarily.

    CoQ10 is needed for mitochondria - being high normal should be fine.
    ADHD meds can negatively impact mitochondria and deplete you of B vitamins.

    Root causes of ADHD are food allergies/intolerances (particularly gluten and milk, but others, too) disturbed gut microbiome (which makes the majority of your neurotransmitters), zinc/copper imbalances, oxidative stress and nutrient deficiencies, especially Bs, aminos, and omega 3 fats.

    A anti inflammatory, nutrient dense, Paleo/ketogenic diet is helpful in many cases.
    Hard to test for. Keeping GSH high and liver and intestinal function working well will help you excrete it. PolyMVA can get it if its sequestered in your mitochondria, but then you need to be able to process it and excrete it.
    That sounds wise. You may not notice but fixing deficiencies helps give your body what it needs to be normal.

    From the info you've provided, I suspect the problem lies with your gut, your immune system, and possible infections.

    It sounds like your had decent help, but may not have investigated these areas enough. There's not a lot of expertise out there.

    I suspect that avoiding foods that are bugging you, killing any parasites, being on a different diet, and working to optimize the strains of bacteria in your gut will help a lot. Then figuring out any immune system problems and finding and treating any lurking infections.
    Your liver filters everything in your body, including infectious agents, which can tajecup residence there.

    Testing for infections and treating them systemically would help.
    You likely need methionine because your methylating so much. Most people don't need it. I do, and find I start to get edgy, depressed, and cranky tired, when I do. My doc monitors homocysteine and when it goes below 6, I seem to need it.

    Low BCAAs have been found in PwME. I take them and don't notice anything specific, nut I've also learned if I'm deficient, my body probably needs it to be normal.
    Do you have PEMT, MTHFR A1298C, and/or CBS SNPs? You may have issues with your Kennedy pathway, which work with phospholipids used in your cell and mitochondrial membranes. Supplementing with NT Factor may help. (Look up Garth Nicolson). Even without those SNPs, you could have increased oxidative and nitrosative stress damaging your membranes. Keeping sufficient folate and B12 in you is helpful, too.

    Tyrosine is used to make dopamine. No tyrosine, no dopamine. I spent a long weekend on the couch, unable to naturopath told me to take 6g of tyrosine and I was revived immediately... I take 3g daily still.
    Probably worthwhile to investigate theseQQ.
    Yippee!! Get checked again yo be sure and look for coinfections, too... Lyme testing isn't always accurate.
    Yes it does. I hope so too. The weird thing is I didn't feel sick for the last 5 years and my WBCs were normal. But, when I started IVIG to boost my immune system, then I felt sick and WBCs went up.

    Again, how? It, or at least, gluten intolerance, may have been missed.
    Having done stool tests for years and taken hundreds of dollars of high quality probiotics only to now have no lactobacillus and bifido bacteria myself, I can say that this is far more complicated than it seems.

    Having no lactobacillus isn't good. Nor is having a huge amount of any one thing, to the exclusion of others. There's no right answer, not enough known, but eating prebiotic foods and a wide variety of healthy foods (avoiding foods treated with RoundUp (grains and legumes), pesticides, and antibiotics) is a good start. Then, looking into more exotic probiotics like Equilibrium, Mutaflor, Symbioflor, PrescriptAssist, and Dr. Ohhiras may help cultivate diversity.
    Unfortunately, its more like a 4-6 month project.
    Hmmm... Could it be affecting your microbiome? Maybe test to see if you really need it?
    Nice list! Worth checking some of them out, especially the liver and gall bladder ones. I'm not a fan of Xrays or anything that can perforate intestines. And you don't have pancreatitis - you'd know it if you did...

    Sounds like even though you be hsdcsome decent care and done a lot of testing, you still don't have the answers you need. I ccan see why your parents might be frustrated, and the easy answer is that its all in your head. It's not. You have a serious medical problem and need to find out what it is and treat it. Theres something going on that's treatable and you need yo find it and deal with it.

    This is vexing, not fun, and its not fair. But you've come this far and you can keep going. You be already learned s lot about what you need. Its just this problem is more complex than you ever expected.

    Hang in there snicker us know how it goes!

    Best wishes...

    DISCLAIMER - I am not a doctor, and what I've said is my opinion as an experienced patient, not as a medical should discuss with your doctor before taking any action on the above advice.
  20. Wishful

    Wishful Senior Member

    I've had the same experience of finding some things that reduce my symptoms...for maybe a week or two, and then stops having any effect, even if I try it again years later. My guess is that the new things shift some biochemical balance that disrupts the ME/CFS feedback loop, but then the body adjusts to it.

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