Constellation of symptoms

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Constellation of symptoms

Postby oddbuds » Sun Dec 02, 2018 5:21 pm

Hi,

I'd appreciate if anyone can take the time and provide advice base on their experiences on how I should go about in investigating what is causing the symptoms I have been experiencing. It's a long read so please bear with me.

I don't have any diagnosis yet but for the past 8 mos. I have been dealing with several neurological/constellation of symptoms.

I am 36 yo. male and prior to Mar 2018, my diet has been high red meat, high carbohydrates, low vegetables. After Mar 2018, I changed to high vegetables and fish, medium serving of carbohydrates, less red meat, gluten free, high in good fats (e.g. olive oil, avocado).

Prior to Mar 2018

Before 2018, I have experienced below symptoms and were largely blamed to either stress, getting older, getting tired, or other common cause.

    Wrists and and ankles gets tired/sore/weak easily and felt that resting relieves the soreness/weakness.
    Eyes feels dry and itchy and ice pack helps relieve the
    Recurrent cough without phlegm and recurrent sore throat but doctor's would say my lungs are clear after.
    Shortness of breath that seems to happen at the same time as the cough and sore throat. Doctors would prescribed cough syrup and antibiotics which normally I would not take unless I felt I really needed to.
    Itching that moves around the body and comes and goes. It happens 2 to 3 times a week. Ice pack would help relieve the itchiness.
    On 2016, I had high fever, body aches, cough without phlegm, conjunctivitis (there were swelling around the eyes thus GP diagnosed as such) and was prescribed antibiotic. This lasted for about a week and a half. After this, I just felt my eyes were not as clear as before (i.e. blurry).


On or after Mar 2018

On Mar 2018, swelling of the left ankle that lasted for a week. Unable to walk for 2 days and later was diagnosed as gout and took colchicine for it. GP initially thought was due to infection thus was sent to ER. X-ray of the ankle revealed no fractures. Went to rheumatologist who mentioned that it sounded like gout but will not be able to accurately diagnose without fluid taken from the joint.

    Got flu shot and after 3 to 5 days all the other symptoms started (not in any specific order)

      a. Shortness of breath without exertion that comes and goes
      b. Abdominal pain that comes and goes
      c. Stiff neck that comes and goes
      d. Sharp nerve pain on the left shoulder blades that seem to originate from spine and goes to the head and radiates down to the left leg.
      e. Pins and needles in different parts of the body (arms, abdomen, legs, private part, back)
      f. Feeling of numbness in the left side of the face which would move to the right side of the face
      g. Pain in the forehead that felt like it is being split into two
      h. Sharp pain in the lower back and feels like the nerves exiting the spine are inflamed. The pain seems to pulsates at times.
      i. Sharp and dull pain in the spine which felt like my spine was inflamed. The pain comes and goes and it is usually felt in the middle part of the back and sometimes at the lower part or bottom.
      j. Double/Blurred vision that comes and goes
      k. Difficulty sleeping
      l. Numbness in different parts of the body (e.g. right big toe, upper left abdomen, fingers in the left hand, mid section of the back) that comes and goes
      m. Headache with head pressure that comes in waves and sometime accompanied by pain at the back of the neck and head feels heavy
      n. Felt like all my nerves are being electrocuted in my whole body which happened once and lasted for a few minutes only
      o. Feeling of like someone is trying to pull my teeth. This seems to happen together with the head pressure
      p. Warm/Icy hot sensation that moves around the body (e.g. legs, abdoment, back, arms)
      q. Stiff neck
      r. Feels like insects crawling in my head or feeling of fluid rushing through my veins in the head
      s. Ear ringing that comes and goes
      t. Loss/low libido

    More symptoms experienced on succeeding months (not in any specific order)

      a. Forgetfulness, confusion, brain fog that comes and goes. I experience this together with the headach/head pressure.
      b. Throat feels swollen that comes and goes
      c. Sharp or dull pain tha sometimes favors the left side (e.g. pain in the left arm, left abdomen, left leg, left side of the hip) but also happens in the right side
      d. Pulsating pain in the abdomen, chest/lungs that seems to follow the pattern of veins/nerves
      e. Heart palpitations that comes and goes (Holter monitor did not picked this up though)
      f. Dizziness with/without nausea usually felt in the morning after waking up
      i. Tingling in different parts of the body that comes and goes (e.g. feet, legs, head, body, arms)
      j. Ball of dull pain and/or sharp pain that moves around the chest and comes and goes
      k. Feels something stuck on my throat which lasts for a few hours and comes and goes
      l. In rare occasions, I sweat at night during winter
      m. What feels like joint pain that moves around and lasts only for a few minutes (on left knee, left ankle, right ankle, right knee, hip, finger joints )
      p. Diarrhea that seems to suddenly occur and resolves without taking medication
      q. Chills/feeling cold while under the thick quilt or wearing a jacket
      r. Stabbing/sharp pain in the middle of the abdomen just right of the navel that lasted for a few seconds to minutes
      s. Cramps/spasms/twitching that randonly happen around the body.
      t. Feels like droplets of cold water under the skin that comes and goes and is felt all over the body (e.g. top of the head, arms, legs, shoulders, back)
      u. Feels like air bubbles being popped in my spine
      v. General feeling of being unwell or about to get sick that comes and goes
      w. Internal vibration feeling that moves around the body and comes and goes
      x. Noticed left and right hand hypothenar muscle contracts involuntarily (spasm)
      y. Mild flushing of both cheeks
      z. Noticed my voiced is a bit hoarse as if I have stuffy nose which lasted for a few seconds to minutes
      a1. Sharp pain in the joints (e.g. knees, elboss, finger joints). I can't seem to determine if it is due to nerves, spasms or just joint pain.

    Symptoms that are ongoing (not exhaustive list)

      a. Headache with head pressure coupled with dizziness and brain fog that happens almost everyday.
      b. Cramps/spasms/twitching that randonly happen around the body.
      c. Feels like droplets of cold water running under the skin that comes and goes and is felt all over the body (e.g. top of the head, arms, legs, shoulders, back). Sometimes I feel it mostly in the left side, but I also experience it in the right.
      d. Sore throat/feeling of something stuck in my throat that comes and goes but happens almost everyday.
      e. Blurry vision that comes and goes and happens almost everyday.
      f. The body parts where I experienced numbness before (e.g. right big toe, upper left abdomen), nowadays I would feel dull pain that comes and goes.
      g. Internal vibration feeling that moves around the body and comes and goes

Medical history

    Fatty liver
    Gout (GP diagnosed, rheumy concurs but cannot be 100% certain)
    Elevated cholesterol
    Gallstone
    Possible candida overgrowth
    Allergic rhinitis (self-diagnosed)

I have been to GPs, rheumatologist, and neurologist and have been told that what I'm experiencing is all in my head. The neurologist that I saw mentioned in her website that her specialties includes "Neuroimmunological conditions including multiple sclerosis".
The neurologist was suggesting I have functional neurological disorder (FND http://www.neurosymptoms.org/) which I don't particularly agree. She suggested this on our first appointment without closely reviewing my brain MRI and without ordering MRI of the neck and spine.
She was even rushing through the neurological tests.

I have had:
    several blood tests
    brain MRI
    abdomen ultrasound and CT scan
    DNA test
    Organic Acid Tests

I have been seeing a team of medical practitioners that consists of a integrative GP, naturopath and nurse. they are the only ones who are interested in helping me find the root cause. Unfortunately, they are also stumped.

I was prescribed mirtazapine for vertigo. The mirtazapine helped with my sleep (8-9hrs) but I have now weaned off of it. After stopping mirtazapine, I have only been sleeping for 6hrs mostly.

My supplements are


I'd greatly appreciate if you can help

    a. advise how I should proceed further in investigating the root cause?
    b. name/contact of doctors/specialists who can help me (I am living in Sydney so it would be great if the doctor is in Sydney)?
    c. advise how I can improve my condition through diet, supplements, etc (Let me know any specific test result you would like to know.)?

Thanks!
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Re: Constellation of symptoms

Postby jimmylegs » Sun Dec 02, 2018 6:12 pm

hi and welcome. can you elaborate re several blood tests?

any info re the organic acid testing? i think someone in my family had that done. i am not finding good documentation online - rather the opposite:

"Urine organic acids
A test for inborn errors of metabolism in which organic acids can build up in the body and are then found in elevated quantities in the urine. Though these conditions can present with developmental delays, there are other features as well that usually lead to the ordering of this and similar tests. This patient had none of the hallmarks of an inborn error of metabolism. Of note, this test was performed by The Great Plains Laboratory, Inc., which is used widely by sCAM providers to support bogus diagnoses. It comes complete with unsupported interpretations of test results, and suggestions for the corresponding dietary supplements."

"The predictable pablum of the sCAM provider
Unfortunately I could continue this litany of sCAMed patients, but the story quickly becomes repetitive and predictable. The playbook reads like this:

The patient is labeled with fictitious and typically multiple diagnoses. Some of these may be real conditions, though the patient does not usually have any of them. Others may be pulled from the sCAMer’s grab-bag of fake, alternative diseases.
A multitude of lab tests are ordered. With a stretch of the imagination some of these tests may make sense based on the patient’s complaints, though they are often repeats of tests already performed by the patient’s real health care provider. Usually the tests ordered are completely unwarranted, and are performed with what we call a “shot-gun” approach. That is, the provider blindly orders tests in the hope that something will come up abnormal. This is a dangerous approach that is sure to turn up out-of-range values with no clinical significance, leading the provider to order more tests and possibly make erroneous diagnostic conclusions. The manner in which these providers order lab tests demonstrates a complete lack of clinical insight at best. At worst, it is fraud.
The laboratories used are typically geared toward, and often used exclusively by, sCAM providers. Typically these labs sell their own proprietary laboratory-developed tests (LDTs). Though these tests may provide valid results for a given specimen of blood, urine, saliva, or hair, the results are not necessarily, or even usually, clinically valid. As exemplified in the cases above, the finding of yeast elements in a stool sample or a slightly elevated arabinose level in a random urine sample has absolutely no clinical significance. Nevertheless, the sCAM providers who order these tests are quick to misinterpret the clinically meaningless results to generate false diagnoses and offer up useless and potentially dangerous treatment recommendations. Some of these labs make recommendations for dietary supplements based on the test results, and even sell their own products through their website or through the provider who ordered them. Typing the names of these labs into Google will bring up a barrage of woo-laden web sites, and sites for naturopaths, chiropractors, and other integrative medicine providers. Fortunately there are science-based takedowns as well (here and here). Try it:
Genova Diagnostics and Metametrix Clinical Laboratory. After suing each other over who has the rights to run which bogus tests, these two giants of sCAM have now merged into one pseudo-science behemoth.
Great Plains Laboratory
SpectraCell Laboratories
Neuroscience
Unnecessary or potentially dangerous treatment recommendations are made (see above). Invariably, some form of pseudoscience-based treatment regimen is foisted upon the credulous sCAM patient or their parent. This often comes in the form of a dietary supplement – either an herbal, homeopathic, vitamin, mineral, or biologic (amino acid, neurotransmitter) product. Sometimes the product is a proprietary concoction, obtainable only through that office. Either way, many sCAM providers have an on-site or web-based store through which their patients can purchase the recommended treatments."

lol spectra cell i've read a few of their pages for sure.

dr. snyder's general ire makes me chuckle a bit. some of it is valid for sure, but he took a shot at three of my fave nutrient tests lol. i'm literally writing up the paper on them right now. i'll be interested in whether they appear in your blood test list :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Constellation of symptoms

Postby NHE » Sun Dec 02, 2018 8:12 pm

oddbuds wrote:My supplements are

Lavender oil


Why are you taking lavender oil? There has been some evidence that lavender essential oil may be an endocrine disrupter and activate estrogen receptors.

https://www.medicalnewstoday.com/articles/321262.php

https://www.endocrine.org/news-room/201 ... disruptors

https://www.nih.gov/news-events/news-re ... rowth-boys
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Re: Constellation of symptoms

Postby oddbuds » Sun Dec 02, 2018 9:06 pm

@NHE, I was checking if it helps with improving my sleep. I can't seem to find the study that I read which prompted me to consider it. I'll post back once I find it. Anyway, my sleep has been horrible lately. I have no issue falling asleep in the evening but once I wake up which is usually after 6hrs of falling asleep, I will not be able to sleep again.

@jimmylegs, now I feel sCAMed 8O :oops: :cry:. I am quite desperate to find out what's causing my symptoms as it is affecting my life and work. Even at this moment, I am at work, it's quite difficult to focus and think and that's why I thought of reaching out to more people who have experience and done a ton of research already like you guys. My blood test results are scanned copies. It's best to show it to you rather than typing them here as there are alot of tests that they did. I'll figure out how to post the scanned copies here.
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Re: Constellation of symptoms

Postby NHE » Mon Dec 03, 2018 1:40 am

oddbuds wrote:@NHE, I was checking if it helps with improving my sleep. I can't seem to find the study that I read which prompted me to consider it. I'll post back once I find it. Anyway, my sleep has been horrible lately. I have no issue falling asleep in the evening but once I wake up which is usually after 6hrs of falling asleep, I will not be able to sleep again.


Try 1 mg sublingual melatonin. https://www.vitacost.com/superior-sourc ... -tablets-1

If that doesn't work, combine with 100 mg sublingual GABA. https://www.vitacost.com/superior-sourc ... al-tablets

Some people have reported good sleep effects with CBD oil, but the melatonin and GABA cost a whole lot less.
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Re: Constellation of symptoms

Postby Scott1 » Mon Dec 03, 2018 3:28 am

Hi,

The more I read of your symptoms the more I thought "an infection". What did the blood tests look for? Did they look for mycoplasmas, rickettsias or any specific bugs? Have you traveled anywhere exotic in the 2 years prior to these symptoms emerging?

Your shortness of breath also made me think you should get an ENT surgeon to look straight up your nose to see if you have a deviated septum. Do you still have your tonsils? A blocked nose and rotten tonsils will cause that sort of cough if you are a mouth breather (speaking from experience here).

I certainly don't believe its all in your head.

Regards,
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Re: Constellation of symptoms

Postby ElliotB » Mon Dec 03, 2018 3:31 am

For sleep, I take 3mg melatonin plus this all natural relaxant product:

https://www.amazon.com/Dee-Cee-Labs-Str ... ormula+303
works like a charm!

FYI: The Natural Relaxant Tablets smell awful


"a. advise how I should proceed further in investigating the root cause?"

try other doctors. Since you seem to suspect MS, find a neurologist that specializes in MS.


"c. advise how I can improve my condition through diet, supplements, etc (Let me know any specific test result you would like to know.)?"

I liked much of your diet prior to Mar 2018. But feel it could be improved upon with a couple of minor changes.

I suggest you read the Wahls Protocol book, and this free e-book (The Real Diet of Man):

https://www.texasgrassfedbeef.com/grass ... l-diet-man


and follow a diet which is basically a gluten free, sugar free, and high in good omega 3 fats (meats from grass fed animals ONLY and WILD caught seafood, nothing farm raised). Veggies are optional and you get the best nutrition and health benefits if you grow them yourself indoors. Although Australia is known for its exceptional grass fed meats (which I consume a lot of as one of my local supermarkets imports a lot of meat from there), not all of the meat in Australia is grass fed so shop very carefully.


Since you state your new diet has foods high in good fats, I suggest you research what types of fats the foods you are consuming have and what is a 'good' fat (hint: Omega 3 fats). Although Olive Oil is considered 'healthy' by most, olive oil is not heart–healthy and not as healthy as most think. Yes, foods rich in monounsaturated fats like olive oil may be better than foods full of saturated and trans fats, but just because something is “better” does not mean it is good for you. Choose your fats wisely - Omega 3 is the way to go.

"I changed to high vegetables and fish"

Modern vegetables have little nutrition and have other health concerns. Fish and seafood, if wild caught, are an excellent choice. By the way, you may be surprised to find out that grass fed meats and wild caught fatty fish like salmon and tuna are all high in good omega 3 fats.


Keep in mind that there is not one diet that has been 'proven to work' but all diets seem to work for some and not for others. Low fat diets and high fat diets both work (for some).
What I have outlined works well for me.

Since you have changed your diet, have you noticed any difference in how you feel?
Last edited by ElliotB on Fri Dec 07, 2018 7:16 am, edited 1 time in total.
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Re: Constellation of symptoms

Postby oddbuds » Wed Dec 05, 2018 10:39 pm

jimmylegs wrote:hi and welcome. can you elaborate re several blood tests?


@jimmylegs, here are my blood test results

Part 1 (Mar and Apr)

Part 2 (Mar, Apr, Jun)

Part 3 (Jul)

Thanks
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Re: Constellation of symptoms

Postby oddbuds » Wed Dec 05, 2018 10:46 pm

NHE wrote:
oddbuds wrote:@NHE, I was checking if it helps with improving my sleep. I can't seem to find the study that I read which prompted me to consider it. I'll post back once I find it. Anyway, my sleep has been horrible lately. I have no issue falling asleep in the evening but once I wake up which is usually after 6hrs of falling asleep, I will not be able to sleep again.


Try 1 mg sublingual melatonin. https://www.vitacost.com/superior-sourc ... -tablets-1

If that doesn't work, combine with 100 mg sublingual GABA. https://www.vitacost.com/superior-sourc ... al-tablets

Some people have reported good sleep effects with CBD oil, but the melatonin and GABA cost a whole lot less.


Thanks NHE. I'll try it out. The naturopath recommended me to try MG OPTIMA™ RELAX but did not see improvement with sleep duration.
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Re: Constellation of symptoms

Postby oddbuds » Wed Dec 05, 2018 11:00 pm

Scott1 wrote:The more I read of your symptoms the more I thought "an infection". What did the blood tests look for? Did they look for mycoplasmas, rickettsias or any specific bugs? Have you traveled anywhere exotic in the 2 years prior to these symptoms emerging?

Some of the bugs you mentioned I believe are included in my most recent blood tests which I would get a hold of by next week. I was in Singapore when some of the symptoms started emerging. I also worked in Minnesota US for 14mos but that was 10+ years ago. and have spent a lot of weekends outdoors. I even went camping for one night near Wisconsin. In my view, I agree that infection is a possible cause.

Scott1 wrote:Your shortness of breath also made me think you should get an ENT surgeon to look straight up your nose to see if you have a deviated septum. .

With regards to shortness of breath, there was an episode where I felt the nerves going to my lungs are inflammed and the pain is pulsating. I rarely get this issue now.

Scott1 wrote:Do you still have your tonsils? A blocked nose and rotten tonsils will cause that sort of cough if you are a mouth breather (speaking from experience here).

Yup, I still have my tonsils. I did have recurrent issues with blocked nose and sore throat.
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Re: Constellation of symptoms

Postby oddbuds » Wed Dec 05, 2018 11:16 pm

ElliotB wrote:For sleep, I take 3mg melatonin plus this all natural relaxant product:
https://www.amazon.com/gp/product/B0016 ... UTF8&psc=1
works like a charm!
FYI: The Natural Relaxant Tablets smell awful

Thanks. What are the contents of The Natural Relaxant Tablets. I can't seem to find the list from the link provided.

ElliotB wrote:try other doctors. Since you seem to suspect MS, find a neurologist that specializes in MS.

Yup, I'm searching for a new neurologist. I am having difficulty finding one as I'm looking for recommendations from other people. I can google neurologists in sydney that specializes in MS but could end up with the same doctor as my current one.

ElliotB wrote:Since you have changed your diet, have you noticed any difference in how you feel?

Well, after changing my diets, when I have colds, it seems shorter and less severe? Actually, I started to increase meat in my diet and added back eggs (free range). I eat grass fed organic beef.

Thanks for the tips!
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Re: Constellation of symptoms

Postby Scott1 » Thu Dec 06, 2018 12:25 am

Hi,

On that last issue, maybe get the ENT man to look at your tonsils as well as why your nose is blocked. It does make a big difference.

Unfortunately, we are talking about surgery and I expect you will damn me to hell if you have to go through with it. Only an ENT surgeon can make the call. GPs generally are not up to speed.

If it required, its not an MS issue. More likely, its bad luck. I had my tonsils out when I was 40 and my septum unblocked about 18 months earlier. None of it is pleasant but I'm glad I did it.

Regards,
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Re: Constellation of symptoms

Postby ElliotB » Thu Dec 06, 2018 7:04 am

Formula 303 Natural Relaxant has 3 all natural ingredients, Valerian root, passiflora, and magnesium carbonate.

Valerian Root: Derived from a herb that is primarily used to treat sleeping disorders, specifically insomnia. It works as a sedative that calms the brain and nervous system, therefore relieving anxiety or stress that may be keeping the user up.

Passiflora: A flower whose above ground parts are used to make medicine. It can treat several different symptoms and has many uses, but is mostly used to treat sleep problems. The chemicals within the plant are calming and can induce sleep while also relaxing muscles and preventing them from spasming.

Magnesium Carbonate: A mineral that is primarily used to treat users who have a low amount of magnesium in their blood. A healthy amount of magnesium is key for proper function of the heart, bones, nerves, and cells.

This product seems to have very good to excellent reviews on numerous sites on the web, including over 1600 reviews on Amazon alone with a 4.5 star (out of 5 rating). I have been using it for about 9 months. I only take 2 tablets before I go to sleep, the recommended dosages are typically higher depending on what you are taking it for. Apparently it works for muscle spasms and stress as well. It definitely works for me.

It is relatively inexpensive and worth a try if you have sleep issues, muscle spasms and/or stress.
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Re: Constellation of symptoms

Postby lyndacarol » Thu Dec 06, 2018 12:42 pm

oddbuds wrote:here are my blood test results

Part 1 (Mar and Apr)

Part 2 (Mar, Apr, Jun)

Part 3 (Jul)
Your 25-OH Vitamin D level in Mar & Apr 2018 was 65 nmol/L (your lab's reference range: 50-140 nmol/L). This is the equivalent of 26 ng/mL which is frankly deficient in my lab's reference range of 30-100 ng/mL.

Discuss with your doctor the possible benefits of raising your vitamin D level to the top of the range with supplements.
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Re: Constellation of symptoms

Postby jimmylegs » Thu Dec 06, 2018 2:27 pm

@jimmylegs, here are my blood test results

Part 1 (Mar and Apr)

Part 2 (Mar, Apr, Jun)

Part 3 (Jul)

Thanks


ok lots going on here, not simplistic. i'm not any kind of pro. just know about a few nutrients and how they interact with a few other goings-on.

my initial thoughts:

b12 looks good in pmol/l, and the MCV, MCHC back up good status from the haem perspective at least.

re ALP, GGT, ALT, AST - unhappy liver; i'll need to read back over your earlier info again. also need to read up on LD

high cholesterol, highish triglycerides, i'll read back to check if you've been working on those to any extent already.

re d3, 65 is insufficiency. 75 bottom end of desirable. other lit IDs 90-100 nmol/l as the best bet for a *limited* array of outcomes. some work IDs 150 nmol/l as a good zone and any higher leading to more problems in certain groups. the research is finally starting to get into interactions to a greater degree, ignorance of which over the years has been and apparently continues to be a pet peeve of mine.

good to see that ferritin coming down over time. was that spike earlier in the year related to that apparent infection? wonder if it has continued to drop into a better part of the range (80-100 ug/l or so?)

CRP looks high more often than you want, but is it from a sequence of infections? can also be high in context of suboptimal magnesium

Mg status could definitely be better; could be worth the effort to push that up to at least 0.95 mmol/l.

last page is on the annoying side; no local referene ranges included (not to say those are perfect by any stretch, mind you)

k i need to eat, then will read a bit more :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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