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Recently diagnosed with CFS, symptoms for 2 years. What to do?

Discussion in 'General ME/CFS Discussion' started by Liam, Jan 6, 2015.

  1. Liam


    Hey everyone!

    I've actually been checking out useful information on these forums for while trying to fix myself. I've tried various sleep aids, mineral and vitamin supplements, life style changes, parasite detoxification, diets(low carb,res starch, ketogenic).
    Sadly, my health still goes up and down like a yoyo! I'll outline my persistent symptoms and fluctuating ones.

    -Horrendous intracranial head pressure and brain fog. At times I have to pass out. It's always present, but some times (usually when I fast for 14+ hours) tolerable. It seriously affects my thoughts . Magnesium glycinate helps. I have days where it's clearer but not absent entirely.

    - Consistent thoracic and cervical spine pain. Feels compressed, tight and like it needs to click every 5 minutes.

    - Reactions to pretty much any food I eat ( strangely, fruit on an empty stomach after a fast goes down well- I feel quite energized at times). Brain fog comes along usually 45 mins or so later when food is eaten and my mood and energy becomes very low. I have days which are clearer, almost like I'm mending.

    -Interrupted sleep and insomnia. Oddly, I have days where I will fall to sleep no problem. Usually once a fort night/week.

    -Athletic performance and recovery is poor. I make the gym once a week now and it takes me a while to recover. Can't lift anywhere near what I used to be able to. I think creatine has helped a bit though and co enzyme. This area is getting better which is pleasing.

    -Paresthesia and body pains. The body pains can be a sharp stabbing pain which can occur anywhere in my body, be it my brain, face, foot, lungs or heart. Sometimes, they're simply muscle spasms, tingles and dull aches. Magnesium seems to help but not stop the symptoms. Have days where I don't have the pains much at all as well.

    -Horrible gas, especially with protein rich meals. Betaine HCL and enzymes help a little but don't cure.

    - At times house bound with weakness in knees and legs.(only usually for a day or so).

    - A feeling of loneliness and isolation at times. I'm 26 years old and was training to be a fitness instructor before cfs got me, and most people around me seem to dismiss me as having a mental health issue.

    I'm seeing a naturopath, cranial osteopath etc who have helped ( back pain returns a day later though). Unfortunately I can't implement psychological help to well whilst I still have this brain fog and pressure. Cranial osteopath says my cerebral spinal fluid never feels like it's moving and my head is tight.
    So recently I had a whole spectrum of tests done with some conclusive and inconclusive evidence. My naturopath is a little miffed by me and them as nice as he is, and I would love to have some guidance on what to do next.

    So: Heavy metal toxicity test showed:

    -Toxic levels of Cesium, slightly above reference level.Toxic levels of Thallium, double reference level. Borderline rubidium and barium toxicity. Prussian blue can chelate, although my naturopath hasn't worked with it before. All the classic metals like mercury and aluminum are low.

    -Antibodies for toxoplasmo gondii. Suggestive of previous infections but not current.

    - CDSA showing little problems with digestion but 5 additional bacteria and mycology specimens. Also, i am missing some very beneficial bacteria.

    Lactobacilius species NG ,( no growth)Escherichia Coli NG, Bifidobacterium 4+

    Additional: gamma haemolytic Strepococcus 4+, Bacilus species 2+, Klebsiella pneumoniae 1+

    Mycology: Rhodotural species 1+, candida parapsilosis +1

    Non pathogen is next to all but some are just out of the yellow "potential pathogen amount". I find it hard to believe the high strepto and low beneficial bacteria can be any good. Ive been supplementing with high quality pro biotics for a while so don't know why they aren't present.
    That's all the test data for now. Also, my butyrate production is quite low. Im guessing chelation for sure, but what about a candida cleanse or bacterial cleanse? I've done a 2 week parasite cleanse with Pau' d arco, clove, walnut etc before and I have never felt so unwell in my life and had some odd looking stools. No worms or anything were found in the CDSA.
    A direction and plan of action from somebody more experienced would be wonderful :). Im off for a walk by the river bare foot to get some grounding in, will be back shortly. Fasting at the moment so feeling "functional".

    Thanks for your time, wishing peace and happiness for you all.
    Last edited: Jan 8, 2015
  2. Valentijn

    Valentijn Senior Member

    @Liam - Here's some things which I've personally found useful, and you might want to look into:

    I take 2-3 grams of fish oil per day to keep the headaches away. It shouldn't be liver oil, since that has too much vitamin A. It takes about a day for it to start working for me, and a similar amount of time to wear off if I stop taking it. Laying down more also might help, if OI (orthostatic intolerance) is contributing to the headache.

    B12 seems to help me with pain, or at least hydroxoB12 does. Possibly due to antioxidant properties? And of course, not pushing my physical limits helps to keep the pain levels down.

    Digestive enzymes have helped me a lot with food intolerances, though avoidance is still my primary means of coping with it. But the digestive enzymes means I can "cheat" when I want to or when I don't have any choice. I use prescribed Creon 150, but there are also over-the-counter enzymes available. It sounds like you already use an enzyme, but it might help to try other brands/formulas.

    For my sleep problems, I take Jarrows Sustain NAC (N-acetylcysteine) shortly before bed time. It helps shut down my brain so it isn't buzzing constantly, and I can switch off and go to sleep. I usually take it during the day as well - it doesn't make me sleepy, but just lets me sleep when the time comes. Some people say that they do better with glycine instead of (or in addition to) the NAC. Resolving pain problems can also help with sleep quite a bit.
    Alea Ishikawa and Woolie like this.
  3. Liam


    Thank's for your reply. I've been taking NAC for a while now but not tried before bed time so I'll give it a go. I usually do about 1 gram of nutri- eskimo fish oil a day so I'll up the dose. Fish oil confuses me, I've heard so much conflicting information regarding efficacy and safety. I know high quality fish oil's shouldn't be a problem, yet some still report problems.

    Does anyone know if it's worth "nuking" some of the potentially bad mycology and bacteria? I get the feeling that once I finish chelation and resolve the chronic head pressure and fog I can probably make a 80% recovery within a year or so. But if toxoplasma or strepto are capable of causing bad brain fog then maybe have to? Not really sure what's the best path to take, I find it hard to read what my body wants to be honest.

    Cheers :)

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