Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

Which test to take next?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by happy, Sep 29, 2015.

  1. happy

    happy

    Messages:
    42
    Likes:
    33
    I wanted to get NutrEval for quite some time and finally have the money to pay for it (I still need to figure out how I'm going to order it from Europe), but now I'm not sure if it's the first thing I should do.

    Maybe I should check the gut first, since nutrient absorption will depend on the gut anyway?

    Or maybe I should repeat the Adrenal Stress Index from 6 years ago in which my cortisol was all over the place - all readings were below the lower reference range, except for midnight reading, which was over the upper range. None in the middle. I can post them if you like. I know my adrenals are not in such a bad shape anymore since I have a ton more energy compared to back then, but still less than I used to have before CFS... How critical would it be to recheck before starting Freddd's methylation protocol?

    Of course the ideal thing would be to find a practitioner that would look into my case and suggest which test(s) to take, but I'm afraid that together with the cost of tests it would go over my budget very quickly...

    My SNPs (from 23andme):
    +/+ MAO A, SOD2 (and some CYP*)
    +/- MTHFR C677T, MTRR A66G, MTRR A664A, VDR Bsm, VDR Taq, BHMT-02 (and some CYP*, GSTP*)

    My main remaining symptoms: PEM (hasn't budged in years), general fatigue (often masking itself as food cravings), bloated abdomen (almost all the time), a ton of gas if I try to eat reasonable portions of vegetables or fruit, nasal congestion and rhinitis.

    Cleared symptoms: I haven't had a major brain fog episode in a few months which is incredible! I have no idea how it happened, but I sure hope it doesn't come back! Also, I have much more energy generally than I used to and social/mental exertion doesn't have such a big impact anymore (physical still does). My extremely irregular period (3-4 times per year) started working like a clock every 28 days. Magnesium used to go right through me, now I seem to be absorbing up to 650mg per day.

    I seem to have developed a tolerance for hunger since I started taking methylfolate a few days ago. I got hungry, didn't have anything to eat (i was out), and after a while the hunger subsided and I was able to function normally. 7 years ago I would be shaking and feeling like I'm going to expire if I don't eat something RIGHT NOW. This is huge for me :) No other effects from methylfolate, except maybe it helped with my acne a bit? That's too early to tell. But I'm not currently taking any of the cofactors.

    Back to the topic... which of the above tests do you think would be most important to take?

    @caledonia, @whodathunkit Sorry guys for tagging... I know you don't know me, but I read many of your posts and would love to read your opinion. Any thoughts?
     
    Last edited: Sep 29, 2015
  2. taniaaust1

    taniaaust1

    Messages:
    11,875
    Likes:
    12,622
    Sth Australia
    I'd personally first look more at possible food issues as there is only so much which will help if you have food issues and are eating wrong for them eg you could have fructose intolerance (common in ME/CFS), that commonly causes a ton of gas with fruits..

    I also wonder if you have an issue with insulin/carbs. Most common cause of missed periods (after pregnancy of cause) would be polycystic ovary syndrome (PCOS).. with PCOS 80% of women by the age of 40 develop diabetes or hyperinsulinemia (a prediabetic state). Hyperinsulinemia though most drs aren't aware of it, it can cause lots of different symptoms (gas is a common one with it) in some esp around foods which have sugars or carbs eg fruits, high carb vegetables etc.

    My own PCOS came good (regular periods for first time in my life) when I went on a very low carb diet though I still have insulin issues and still are starting to go diabetic now, so still have the complications of this though I guess with the regular periods now, I would be no longer classified as having it? (I still though carry the other symptoms of it).

    So though you probably couldnt get a diagnoses of it now with normal periods (though polycystic ovaries from the past would still show on a ultrasound as the many developed egg follicles would still be there even if the abnormal hormones had corrected themselves), I wonder if PCOS was ruled out in the past for you. (doctors are often slack around that though it can cause complications other then diabetics eg higher risk of heart disease, obesity etc. If you start missing periods again, make sure that's ruled out.

    (that need to eat regularly or NOW!! thing, though its common in ME/CFS too, it can also be a sign of prediabetics or hyperinsulinemia). Hyperinsulinemia can be tested for via a 2hr glucose tolerance test with the insulin levels included (unless a special note in put on the test, 2hr GTT tests usually don't check insulin levels too). The test also needs to be got to a lab on ice if it has to be transported elsewhere or the insulin level can degrade during transport and give a false negative (I see a leading specialist in this field).

    Anyway, from your post I suspect you have a or some food issues be it food intollerances or other food issues to also deal with which may be a good idea to deal with first. In this illness, I personally believe dealing with sleep issues, dealing with diet and getting the pacing right, I see as the 3 foundation things to get right or as best as one can before trialing everything else as these not right, can minimize the affects of other things you may trial.
    .......

    by your post it wasn't clear to me if those symptoms were a response to some foods or not. If not obviously to food. You may want to consider getting a nasal swab done as it has been found that those with ME/CFS often carry toxin producing kinds of staph in their noses which can produce those symptoms. (Though 25% of normal healthy people carry staph there, they don't often carry the toxin producing kinds of it there like we do).

    If you do have staph there, there should be a test to test what antibodics can be used to treat it. (my nasal staph was resistant to over 3/4 of the 11 they tested against it).
     
    Last edited: Sep 29, 2015
  3. happy

    happy

    Messages:
    42
    Likes:
    33
    taniaaust1, thank you so much for your detailed reply!

    Yes, I have thought about being fructose intolerant. I love fruit, but almost never eat it these days at it leaves me so bloated and gassy :( I get most gas if I eat sweets and vegetables on the same day. Even if a serving of vegetables that wouldn't give me problems otherwise, sweets do something really nasty to it while starches usually don't. I say "usually". Right now everything I eat seems to cause problems :(

    My diet is not very good. I usually get my main meal as a takeaway, then eat store-bought salads and sandwiches the rest of the day. Cooking has never been my forte, much less now when energy is limited. I have managed to go twice for two months without sugar, grain and diary, which was low-ish carb, high fat. My energy improved and I was able to eat more vegetables (still modest servings).

    Hyperinsulinemia: I just checked my first ASI profile from 6 years ago and fasting insulin was 21 (reference range 3-12 uIU/mL). The second ASI profile done a year later showed fasting insulin at 10 uIU/mL, so within the reference range. Since then my shakiness has gone down considerably, though I never ate a very low carb diet because that leaves me soooo hungry all the time... and fatigued. My doctor only checked fasting glucose and since it was normal he refused to order other tests.

    Thank you for the warning about PCOS. I made an appointment to check it out a few months ago after a friend told me what it could be, but had terrible stomach cramps that day and couldn't go (can't remember why - this is not a regular thing for me). Then my periods normalized. I will be sure to make an appointment if irregular periods come back.

    I don't think my doctor will be willing to order the test, so I would have to find a place where I can order it myself. But then I see there's not much they can do anyway, the standard way to treat it is with diet. So I could just change the diet and skip the test, right? Not to very low carb, but skipping the simple carbs, maybe adding resistant starch (though I shudder to think what would happen to my gas problems...).

    No, it's not in response to food. Thank you for the info about Staph - very interesting about different kinds. Did you successfuly treat the staph infection? What were your symptoms?

    Thank you again, it helps so much to discuss these things and get a new opinion, not just keep turning them over in my head :)
     
  4. sillysocks84

    sillysocks84 Senior Member

    Messages:
    445
    Likes:
    346
    @taniaaust1 is pcos a common condition in me/cfs? I was diagnosed 8 years ago, but I had sudden onset cfs/me after a vaccine 3 years ago.
     
  5. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,220
    Cincinnati, OH, USA
    @happy Hypoglycemia (low blood sugar) can be a function of either hypothyroidism or adrenal fatigue. Ben Lynch has a one hour video linking thyroid issues to MTHFR and lack of methyfolate. If your adrenals are wacked out, there is a good chance your thyroid is affected too. So taking folate could have caused some improvement there.

    I've had some nice improvement in hypoglycemia too.

    Back to the original question. I think with the gut issues you report, I would do a stool test first and then work through the 4R Gut Rebuilding Program. See my signature link for more info.
     
  6. happy

    happy

    Messages:
    42
    Likes:
    33
    Thanks, @caledonia :) My doctor did test the TSH, FT3 and FT4. The TSH was elevated and I had an appointment with a specialist. They retested and the values came back within reference ranges of the laboratory. As I recall there is quite a debate around what the correct reference ranges are and my values were way outside the more strict reference ranges, so I don't know what to think. I will try to find the Ben Lynch video, sounds interesting!

    Yes, I read your document about 4R Gut Rebuilding Program, it's one of the reasons I started wondering whether NutrEval was really the first test I should take.
     
  7. taniaaust1

    taniaaust1

    Messages:
    11,875
    Likes:
    12,622
    Sth Australia
    Yes, the nasal staph in my case didn't come back thou dr warned me they often do.

    I've had a lot of issues with staph in various places over the years with ME/CFS.. I even got it in my thigh and had it kept reincuring in my leg which took over a year to get rid of it to the point it stayed gone from there (I realise now it was probably the resistant kind there too).. apparently staph issues are common in ME.

    When I had the nasal staph, I also found out I had step B elsewhere.. so fortunately was able to use an antibiotic it wasn't resistant too to treat both things at same time (and took large doses of olive leaf extract at same time seeing doctor told me these things hard to get rid of, to help give them an extra kick).

    My nasal staph.. I didn't really notice it there but was tested there as I'd read about us having toxin producing staph there which can make us unweller so I hoped if found and treated would help me feel a bit better. (I did used to get a stuffy nose at times but more allergy things).

    Like most things, it was disappointing to treat these things successfully but not notice a difference. I know though that some others have been helped with nasal symptoms or what was previously thought to be just sinusitis by treating it.
     
  8. taniaaust1

    taniaaust1

    Messages:
    11,875
    Likes:
    12,622
    Sth Australia
    No as far as PCOS goes I don't think so. It was a condition I would of had way before ME/CFS though it went undiagnosed for a very long time. Though who knows. I don't think this kind of thing has been studied enough with us.

    One ME/CFS specialist though has said issues with hyperinsulinemia and carbs are more common in ME/CFS (I think was Dr Sarah Myhill which has said that. I know some other ME/CFS specialists also get patients to cut down on carbs).
     
    sillysocks84 likes this.
  9. taniaaust1

    taniaaust1

    Messages:
    11,875
    Likes:
    12,622
    Sth Australia
    Seeing you've had abnormal test show with thyroid, sounds like it should be an area to put more focus on to trial some things esp since there is a lot of debate in that area. Maybe seek out a dr which would allow you to do so.
     
  10. happy

    happy

    Messages:
    42
    Likes:
    33
    Yeah, maybe I should look into it again. Back then I couldn't find anyone in my country (Slovenia) that would be willing to deviate from standard practice and it was impossible for me to travel because I was too weak. It's ironic, isn't it? That I couldn't get to a specialist back then when my symptoms were the worst, but I would be able now... I assume now my readings are probably closer to normal.
     
  11. whodathunkit

    whodathunkit Senior Member

    Messages:
    1,158
    Likes:
    1,469
    That is great news! Congrats on that!

    Sorry I didn't respond earlier but I overlooked the notification. I was not online much this week as I was "unplugging" and doing a bunch of stuff around my house.

    I wish I could be of more help here, but I'm not real big on lab tests. I like them, but they're pricey and IMO if you get too many at one time the feedback can sometimes be counterproductively overwhelming. Because of that I usually treat my symptoms based research of symptoms and treatment options, and then after I've implemented some treatment, on the feedback my body gives me. Basically a "trial and error" approach. Mostly I use lab tests as confirmation or denial that I'm doing things properly. It's exciting to get good labs back after a lot of hard work. :)

    I also don't pay much attention to my snps, except as they may confirm what I've experienced by trial and error or simply from being a freak (e.g., with +/+ MAO A ;) ). My personal belief is that treating according snps instead of experience might be unnecessarily limiting and could risk missing what might otherwise be an effective therapeutic avenue. YMMV on that.

    That's a long way of saying I'm not going to be much help with this. I will say that a betterment of your symptoms after taking methylfolate is probably a good sign that that can be a good avenue for you. But how you proceed with that should be a decision based on research and what's right for you. Methylfolate typically requires other supps for it to work properly (notably methylB12 and adB12), and using it can get complex pretty quickly and for a long time. But it is very rewarding if you find the right combo of stuff to make it work right for you.

    I also consider working on the gut a very worthy goal and consider it to be the second best thing I ever did for my health. But again, achieving good results can become a complex undertaking. If you want to work on the gut you might consider researching bifido bacterias and starting off with a nice complex of them. I've found infant probiotics with b.infantis and a few other strains to be very beneficial. Also soil-based probiotics like Prescipt Assist brand, and another probiotic of clostridium butyricum called "Miyarisan". Raw potato starch can also be a useful prebiotic, as can inulin and beta glucans. I used isolated prebiotics like that for a while to help "load" my gut with food for the good flora, although now I mostly get my prebiotics from food.

    Just be aware there are a lot of side effects when using gut supplements that can be difficult to work through.

    Wish I had more. But good luck. Let us know how it goes. :)
     
  12. JAH

    JAH Senior Member

    Messages:
    455
    Likes:
    504
    San Jose
    I also think you should look into food issues - food allergies, celiac, SIBO. You could do a food elimination test on your own. Eliminate the most common food allergens (wheat, corn, yeast, soy, milk - there are many others, but those are the major ones. I was became allergic to shellfish and almost died, so food allergies are no joke) and see how you feel. Then gradually introduce them back not your diet. A lot of info on this subject here and on the web. For me some of the food allergy symptoms were headaches, abdominal cramping (IBS type symptoms), rashes, itching.

    Celiac is an easy blood test, (sort of, might also need a scope of you really have it) and a serious condition. You would have bloating and weight loss at the same time.

    Sibo is a somewhat common problem for us. You can get that tested and the treatment significantly helps some people. More info on that on these forums.

    Good luck, JAH

    P.s. As a friend and doctor once told me, you'll never run out of doctors and tests, it's up to you to stop.
     

See more popular forum discussions.

Share This Page