My test results

[trickydisco]

New to the forum

Had CFS for 11 months now which started on Christmas day last year. Had really bad symptoms for 3 -4 months - in bed for 1 month, extreme fatigue, brain fog, hot and cold flushes. tremors,kind of startle reflex

This has now diminished to the point where i can hold down a n office and cycle 10 minutes to work. I still experience the fatigue on a daily basis and i'm not able to exercise for enjoyment (was a very keen cyclist). As with others i have good and bad days. I still experience weakness and shakyness in my legs if i'm walking up/down stairs.

Sought all the avenues with the NHS (UK) but got no where so saw a functional doctor and got some tests done a few weeks ago

So it looks like i'm highly sensitive to mercury. I have 5 amalgam fillings. I actually had 2 replaced back in March of this year but this was before i knew anything about mercury, functional medicine or what was causing my fatigue. This was with a conventional NHS dentist

I'm looking into getting them replaced but worried about the after effects.

I've been reading a lot recently about the Niacin sauna protocol which is good for flushing out heavy metals out of the body. I've also been reading about the Andrew cutler protocol and the many chelators I could use.

Wary of stories of people having adverse effects of Cilantro and foods which move the mercury around.

My functional doctor has said that there could be others things causing my fatigue (presence of Ebstein barr and herpes virus in my system)

Wondering if others have done these tests and what processes you have gone through to get well again.

i've been told to supplement with zinc,magnesium, vitc and to take zeolite to remove some of the mercury /metals from my body

 

[rodgergrummidge]

Out of interest @trickydisco , how much do such tests cost and how much for the doctor consult to go over and interpret your tests?

Rodger

 

[Mary]

@trickydisco - I had the ATP testing done by Sarah Myhill 7-1/2 years ago and my results were similar to yours (bad). She also did several other tests, just about everything was abnormal. She recommended several supplements, only I had already been doing almost everything she recommended. You can look on her website to see her recommendations: http://drmyhill.co.uk/wiki/The_general_approach_to_maintaining_and_restoring_good_health

So the testing basically confirmed that I had marked abnormalities in energy production but the recommendations for what to do did not change anything for me. Though I do think it's a good baseline protocol which probably would have to be tweaked by each individual.

Around the same time I had Nutreval testing done here in the U.S. and this testing showed a severe B6 deficiency and also leucine deficiency, as well as a few other things. Adding in B6 in the form of P-5-P improved my energy. Also I started taking folate (NOT folic acid). I'd already been taking methylcobalamin. The folate also increased my energy but I quickly learned I had to start taking potassium with it. There are a ton of threads on the board about how starting to take B12 and/or folate can cause potassium levels to drop rather quickly as they increase the need for potassium. So these are the some of the main things which have helped me, as well as adding in thiamine - this is all in addition to a B complex. Also branched chain amino acids have helped my PEM recovery a lot. D-ribose also increased my energy.

However, I'm not recommending you take what I do - we are all different. Unfortunately for most of us it is a process of trial and error to see what works. And testing like Nutreval can be very helpful to pinpoint deficiencies.

So all of these things increased my energy, but none of them stopped PEM (post-exertional malaise), the hallmark of MEC/FS.

I see you're still able to work, albeit with fatigue - do you get worse after exertion? I think PEM is generally delayed onset, often hitting 24 hours or more after exertion. It can be physical or mental. But if you have some type of fatigue most of the time which does not worsen with exertion, you may not have ME/CFS, which would be a good thing. I can't tell. But - I strongly recommend you listen to your body and if it tells you to rest, then rest. Don't push through your fatigue. Many have worsened a lot by pushing through when they should have rested.

Re your mercury issues: I never had that particular testing done, although I had some 12 or 13 mercury fillings from childhood which I had removed around 1997 (when I was first getting sick). It was done by a doctor who was supposed to know what he was doing, though he did not recommend I take any supplements. I know a lot more now about what I should have done.

I felt no different after their removal. Since their removal I had a lot of problems over the years with detox symptoms and I'm certain some of it was due to mercury. I didn't tolerate chlorella or anything similar. I tried Andy Cutler's protocol and it was very slow and I didn't notice any benefit.

Through happenstance I came across 3 amino acids which I credit with helping my body to detox properly: glycine, inositol and glutamine. I started taking the glycine for sleep - it helped me sleep but it also hit me like a truck with a severe detox reaction. I got lost going to my sister’s house, was spacey, tired, etc. but I didn’t want to stop it because it helped with sleep. It took several months but I restarted at a very low dose and gradually worked up and now take it with no problem.

Inositol (also for sleep) also caused a detox reaction but much milder, and it was relatively easy to keep taking it.

And glutamine (which was in my BCAA combo) also caused a detox reaction which I eventually got over.

After taking these 3 amino acids for a period of months (maybe 6?) I realized I no longer had detox symptoms. Before, apple cider vinegar would make me detox, anything that had "cleansing" properties would do it. And they don’t any more. I found this article which talks about phase II liver detoxification which I found very informative, and it mentioned these amino acids, as well as several other supplements. https://www.diagnose-me.com/treatment/liver-detoxification-phase-II-support.php

In February 2015 I had mercury testing done by Quicksilver Scientific (https://www.quicksilverscientific.com/testing/mercury-tri-test) and it showed no mercury toxicity and it also showed that my body was able to excrete mercury properly. This was after my detox symptoms had stopped.

Some people swear by Andy Cutler’s protocol. This is just what worked for me.

 

[trickydisco]

Out of interest @trickydisco , how much do such tests cost and how much for the doctor consult to go over and interpret your tests?

Rodger

I paid £125 for the CFS profile test. The others were around £25-£50 each. I'll dig out the price list. I understand if you can get your own blood drawn you can send them off independently to acumen.

I had an initial consultation with the doctor which was £200 and then a follow up which was £60

I think it was worth it. i've got much futher forward than with an NHS doctor

 

[Alexi]

Recommend the fb support group for dr Sarah Myhill where you will find mutual support from others who have had these tests

 

[pamojja]

Through happenstance I came across 3 amino acids which I credit with helping my body to detox properly: glycine, inositol and glutamine.

Just by the way, inositol isn't a amino-acid, and once was considered the B8 vitamin.

 

[Mary]

Just by the way, inositol isn't a amino-acid, and once was considered the B8 vitamin.

You are right - I misspoke!

 

[trickydisco]

Good to hear your experiences Mary. Do you feel better now? Do you still have symptoms?

I see you're still able to work, albeit with fatigue - do you get worse after exertion? I think PEM is generally delayed onset, often hitting 24 hours or more after exertion. It can be physical or mental. But if you have some type of fatigue most of the time which does not worsen with exertion, you may not have ME/CFS, which would be a good thing. I can't tell. But - I strongly recommend you listen to your body and if it tells you to rest, then rest. Don't push through your fatigue. Many have worsened a lot by pushing through when they should have rested.

its hard to say. Like i say i'm at the level now where i can cycle to work (only about 2 miles relatively flat). I feel shaky nearly everyday more so in the morning walking down the stairs. If i've tried to cycle home a bit faster than normal then i feel really bad when i get home.

It's very difficult at the moment as i have a 3 year old and 3 month old to look after. Sometimes a full nights sleep isn't possible and this certainly adds to my symptoms.

I'm also finding it difficult to know sometimes if the supplements are helping. I'm on about 6grams of vitamin c (switched to powder from tablet on advice from the functional doctor(, zinc, vitd3, selenium, magnesium glycinate and b12 ) and taking zeolite to detox the metals out of my body.

I've also starting eating fermented foods to help with gut bacteria.

very interested in what you have said about supplements glycine, inositol and glutamine. I actually have no problem sleeping at all. I do wonder if my cortisol levels are out of whack as i definitely feel worse right in the morning. The shakyness is horrible. It feels like i have no strength.. which is weird as i can then get on a bike and cycle to work.

I'd love to rid my body of this. I used to be a very fit and keen cyclist often training and racing every year. It was the one thing that made me absolutely happy and i find it very hard that i can't really exercise or train anymore

Hoping to see the doctor at the end of the month where i think he'll be giving me b12 injections.