My current treatment and healing regime: Tests

So I have previously covered my seemingly last resort approach with energetic medicine. This is the primary treatment I have received in the past year from a naturopath as well as frequent GP checkups. My local GP still doesn’t get the fact that what I am suffering from is real. Why do I see him? Blood tests and a cheap price! I have had to become my own doctor in a way and basically go into the docs with certain demands and requests for tests. The thing is though that when I get back these tests, my doctor doesn’t know how to interpret them. There is no point in getting tests if there are no implications for management. So after about 16 months I have returned to the doctor who originally diagnosed me. He is a brain and keeps completely up to date with current CFS research and treatment. I felt it was time to do further tests and could trust him to interpret them. When I initially saw this doctor I had no knowledge of CFS and felt quite powerless. This time round I feel educated and more in control. The problem with standard pathology tests is that the normal ranges are based on sick people’s results. No the labs do not go out and test healthy people for healthy ranges they rely solely on the pathology results of people feeling unwell and getting tests done. Check this presentation out by Dr Byron Walsh. Most integrative doctors will understand this and also realise pathology results are never 100% accurate and that we are more than just numbers on a piece of paper.

I myself have found most macro-pathology tests to be of no help to me and my condition. One of the reasons being because in CFS the primary dysfunction is in the immune system and is mostly on a micro-pathological level. Macroscopical tests are designed to pick up primary organ failure but miss minor organ failure such as partial thyroid gland failure, partial adrenal gland failure, mild liver damage, poor ability to detox etc. So it seems there are only limited tests that are worth doing when it comes to standard pathology which is why I am choosing to get more accurate and sophisticated tests done, which are not covered my medicare and are rather expensive. I tried to avoid these because of the cost, but when you have been primarily house bound for over 2 years, really cost is the last thing on my mind.

So on returning to this doctor I have done the following

Standard pathological tests which I feel have helped with pinpointing problematic areas are:

  • IgE test for IgE antibodies in the blood

Typically this can point to non specific allergies but it can also suggest gut inflammation, permeability and parasites. A doctor I saw years ago used the results as part of diagnosing leaky gut. Mine are skyhigh.

  • Thyroid testing

I am not just talking TSH which is actually a pituitary hormone, it is important to asses the Free T3, Free T4, Reverse T3, Thyroidglobulin antibodies and TPO thyroid peroxidase. You can have a normal TSH, FT4 and even FT3 but still have significant thyroid problems. In Australia if your TSH is in range they will not test your FT3 or FT4 unless it is specified you will pay as it is not covered by medicare.

I have discovered I have high reverse FT3 and low FT3, basically hypothyroid. A high RT3 can be caused by lots of stress on the body and hormonal problems (adrenal, sex hormones etc.) RT3 looks the same as FT3 but is actually an inactive hormone which cannot be utilised meaning thyroid symptoms may be present. Here is an article on this here. It is not a cure for CFS but it may be of some help.

  • The obvious iron studies, vitamin D, B-12. Mine are always in the normal range but my doctor says the results should be in the high normal range for optimal wellbeing. Always ask for a copy of test results from your doc so you can check them out yourself.
  • It seems appropriate to test C Reactive proteins CRP and Erythrocyte sedimentation rate ESRΒ to look for inflammation and ANAΒ Antinuclear antibody just to rule autoimmunity out.
  • I found a urine test for Iodine beneficial which stated I was very deficient.
  • Another cheap/free test worth doing is your homocysteineΒ levels. High levels have been linked with the MHTFR gene which has been linked with CFS amongst many other health conditions. This gene can affect methylation, neurotransmitters etc, check out this blog post here. If your levels are high or high normal you may benefit from active folate, B6 and B12 to break down the homocysteine.
    Now for tests that I am doing which are not free but are accurate and helpful
  • Salivary hormone tests
  • Sex hormones
  • Cortisol
  • Melatonin
  • DHEA
  • testosterone
Testing hormones through saliva is accurate because the hormones present are actually active whilst the ones found in the blood are not and so are only a rough guide.
I found this test very useful. My female hormones are shocking (no surprise), My cortisol is normal in the morning then drops quickly by midday but stays high at night which is why I feel the most alert I do all day at night before bed.
My melatonin is extremely high at night and in the morning, off the charts. My DHEA is good and my testosterone is high.

    • Heavy Metal Testing
My doctor initially did a hair mineral analysis through Doctors Data which provides only a snapshot or the tip of the iceberg for many when it comes to the results. It not only shows heavy metals but all the essential minerals as well. Because mine came back positive for Lead and mercury I have gone onto do the most accurate test for heavy metals which is a urine provocation test. You are given a chelation agent and collect your urine for 6 hours after this. This test is also handy as it gives a very accurate reading of the bodies mineral status. So far I have found I am deficient in potassium, zinc, germanium and lithium but shall wait for my provocation test results to confirm this.

  • Complete Digestive Analysis
Probably one of the most worthwhile tests you can do to find out exactly what your gastrointestinal tract is up to. Many of the worlds top CFS specialists such as Kenny De Meir Leir believe CFS begins in the gut and that it is extraordinarily significant when it comes to treatment. Digestion uses a huge majority of our daily energy so it is no wonder it is so highly affected in CFS. 80 percent of our immune system is located in the gut and we all know CFS is caused by a highly dysfunctional immune system which is hyper reactive and T2 Helper cell dominant.
2 years ago I had a standard complete digestive analysis done by Healthscope pathology which was helpful at picking up microflora imbalances, pancreas insufficiency, carbohydrate malabsorption and citrobacter species. After 2 years and worsening of symptoms I believe it is time to retest. This time I am doing the granddaddy of all tests the Metametrix Gastrointestinal Function profile. Highly expensive but highly sophisticated and accurate test. Check out a sample report here. It has many implications for management. You must be prepared to scoop your poop and send it to america for a high price.

There are obviously sooo many other tests you can do but these are the ones that have helped me. Others I have had done which are worth mentioning are the IgG allergy tests to certain foods, but the IgG allergy is only picked up if you have been consuming this food in recent times and are generally not very accurate. IgE allergy testing through blood and scratch testing could be beneficial too.

So these are the most recent tests I have had and next I will share how I am treating abnormalities that showed up and my general healing and treatment regime. Hope these suggestion can help in some way with your own investigations. Adios.

What tests have been beneficial to you? Have you had any of the above?

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3 thoughts on “My current treatment and healing regime: Tests

  1. great advice! The mineral testing is an interesting one in mthfr. years ago I did hair mineral and my copper was off the chart. apparently this is not actually that useful if you have mthfr like I do as the excess heavy metals get stored in fat. From my recent research the only way to really know what your metals status is when you mthfr is to have the urine test and not bother with hair. I am still to find someone that can do a urine test for me….

    I have a very similar hormonal profile. Automimmune thyroid, cfs, high reverse t3 and high testosternone. my LH and FSH ratios are also reversed and I am insulin resistant…ALL MTHFR issues….a very worthwhile test to have if you are in this boat

    Have you ever had epstein barr – the cause of glandular fever and often cfs? It effect chromosome 1 which is the same chromosome mthfr effects…interestingly most genetic diseases are more likely to express themselves when there are chromosome 1 defects or issues. also worthy of note – this is the same place the aids virus targets……..

    anyways enough of my ramblings…hope it helps πŸ™‚

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    • Hey thanks for the comment! I found your blog a couple of weeks ago through Sarah Wilson. Fabulous post on MTHFR. I have not tested this yet only my homocysteine but have spoke with my doc about it. You are right the hair mineral analysis only picks up what your body has actually detoxed in the past few months. So if it is all trapped in the fatty tissues the tests could be negative. That is frustrating you cannot find someone to test, my doctor used Genova Diagnostics I think but Doctors Data does it as well. I have never had my LH and FSH ratio tested or insulin resistance. I was tested for epstein barr but it came back negative, the only virus I believe played/plays a role is HHV6 the sister of epstein and also linked to cfs. They are nasty and hide away in the nervous system and organs until you are weak enough for them to reactivate. Very interesting about chromosome 1 and aids. Thanks again for the advice!

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