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Deteriorated hugely over last 2 years. Any advice?

Discussion in 'General ME/CFS Discussion' started by Ben H, Jan 9, 2016.

  1. Ben H

    Ben H OMF Correspondent

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    Hi Guys,

    I havnt posted here for a while, though I talk to snowathlete regularly who keeps me in the loop somewhat :)


    So my story. I developed CFS 4 years ago. Gradual decline for 6 months (energy in gym.went down, digestion terrible) until hit by proper flu at xmas. Never recovered.

    Since then I feel.I have tried a huge amount. Diet, supplements, Infra red saunas, HBOT, Armour Thyroid, meditation etc etc. The usual mitochondria stuff too.


    Things that have worked, very briefly have been few but include:

    Infra red sauna-cogntive clarity, grip strength and relaxation for 2 days. Now hard to tolerate. No effect except for exhaustion, including using electrolytes etc.

    Armour Thyroid- Took as my TSH is always slightly high (3.5+) but my ft3 ft4 and rt3 are all normal, and upper range. Took one half grain and within 2 hours i had 30% ish more energy. Could actually feel the energy 'running through my veins' per se. Remarkable but lasted only a day or two, maybe a week with less effect.

    HBOT- First time using felt.most relaxed in 4 years but effect wore.off and didnr continue. Too ill to carry on though i did have 15 sessions.

    LDN helped. New tablets dont so much but if I go off them.I seem to.sometimes get a fever. Wondering if Th2-th1 is happening but believed LDN was a TH1 dominant modulator so bit confusing.



    Thats about it thats worked!


    My main symptoms are:

    Extreme fatigue (my mitochondrial function is down the drain)
    Brain fog
    Very poor.digestion, pale stool. Dont seem to produce any bile or stomach acid anymore!
    Unrefreshing sleep
    Sinus issues, cleared up with gaps diet recently



    I had some tests done at ArminLabs for Lyme and coinfections. Will atttach here.

    Was positive on the Elispot but not hugely convinced. However positive on EBV, Coxsackie, and CMV CP (debatable).

    So I seem to have a huge viral load, and am currently taking Valtrex 4g daily aka Dr Lerner. Yes Valcyte would.probably be better but is horrendously expensive and heavy side effects so this is first.

    NOTHING seems to heal my gut, I can make myself constipated with glutamine, but if I dont use that my stool is always yellowish (sorry guys), mushy and mucous like. Again, honesty matters :D

    Digestive supps do absolutely nothing, though Lemon Juice seems to help with the colour back to normal. Helping Bile production?

    Also as my CFS started with digestive upset, Im wondering if it was Coxsackie and things spiralled from.there. Currently on Equilibrant for Coxsackie too.

    Doing Nutramedix Herbs for lyme and Viruses.




    Sorry for long post. Any ideas Id be most grateful.

    B
     

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    Last edited: Jan 9, 2016
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  2. ahmo

    ahmo Senior Member

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    You don't mention your diet. The Gut and Psychology Syndrome (GAPS) die is aimed at healing and sealing gut, as the first step in healing neurological issues. No gluten, dairy, and initially, no starches at all. There are many GAPS blogs, I'll link one and an FAQ page. good luck.

    ETA: whoops, now I read closer, see you were on GAPS diet. Here's another link that might be useful, re TH1/2.

    http://selfhacked.com/2014/07/17/supplements-people-th1-dominant/

    http://kitchenlib.com/basics/its-so-easy-gaps-intro-stage-1/

    http://www.thehealthyhomeeconomist.com/the-five-most-common-gaps-diet-mistakes/

    http://www.gaps.me/preview/?page_id=32
     
    Last edited: Jan 9, 2016
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  3. msf

    msf Senior Member

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    I´m not a (Lyme-literate) doctor, but I noticed that your EBV result says something about low lymphocytes affecting the test result - could this be the case with all the tests? I know KDM says that some patients have to few lymphocytes to test strongly positive on the Lyme LTT, but when they redo the test with more vials they are unequivocally positive. I don´t know how that would affect the reliability of the test, but it just seems odd to me that you are a little bit positive for all of them, unless as Prof. Edwards has suggested, the tests are improperly calibrated, but then why would they all be improperly calibrated by roughly the same amount?
     
    Last edited: Jan 9, 2016
  4. msf

    msf Senior Member

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    I would also recommend trying the FODMAP diet, it´s taken me from ill all the time to just tired all the time.
     
  5. Ben H

    Ben H OMF Correspondent

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    Hi Ahmo and msf,

    Thanks for the replies.

    Im on GAPS as we speak. Organic everything, bone broth all day and no effect so far (2 weeks). Early days I know. Fermented sauerkraut every meal and Kefir.

    Its more my lack of enzymes that is disturbing. I surely have leaky gut, but I just have no bile, or hcl.


    Msf- true about the lymphocytes. Its just for that ebv test afaik. Ive seen others say it for multiple tests but think it was just my ebv vial that must have been low.

    I dont really want to start on iv abx without a sure fire Lyme test. LTT has helped a lot.of people, but the problem is there is no gold standard.
     
  6. Mary

    Mary Senior Member

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    @Ben Howell - have you tried taking HCL? Many of us have low stomach acid. My digestion was in the toilet (pun intended! sorry, that was bad) before I started taking HCL. This is what I take: http://www.swansonvitamins.com/swanson-premium-hydrochloric-acid-pepsin-250-caps - there are a lot of other good products out there too. If I have a meal with a lot of protein, I'll take 3 - 4 caps right before the meal and maybe 2 with lighter meals.

    I've also been looking into thiamine and its role in energy production (huge), it's also required for production of stomach acid (http://www.ncbi.nlm.nih.gov/pubmed/716330) and is just so important in so many processes. About 2 months ago I started taking 50 - 100 mg. of thiamine and within 2 days my energy picked up a lot. And then after a day or 2 it went downhill again. Here it gets sort of complicated. Around the same time I discovered Freddd's post about refeeding syndrome (http://forums.phoenixrising.me/inde...es-to-healing-via-induced-deficiencies.41605/), so I did a little research and found this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/ and what struck me was this paragraph:

    I've already been taking lots potassium and magnesium, but began to wonder if taking thiamine, which I definitely seemed to need, was causing hypophosphatemia, which I am now working to address with a combination of high phosphorus foods (kefir, pumpkin seeds) and a phosphate supplement which I just bought which I ran by my doctor, and have not tried yet, but am going to in a day or so. I had to stop the B1 because of extra fatigue after the initial burst of energy, and want to see if phosphate/phosphorus supplementation will alleviate the extra fatigue. From what I read you have to be careful with phosphate supplementation so will be taking very small dose and keeping up the kefir etc.

    I don't know if any of this is relevant to you, maybe some of it will help --
     
  7. msf

    msf Senior Member

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    It´s a bit weird that it was just the EBV one - did you run out of lymphocytes?
     
  8. mariovitali

    mariovitali Senior Member

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    @Ben Howell

    Please have the following tests since my Theory is that the problems that we have are related to impaired Liver/Gut/Bile functioning :

    ALT/AST
    Albumin
    Bilirubin
    Gamma-glutamyl transpeptidase (GGT)
    Lactate dehydrogenase(LDH)
    Alkaline phosphatase (ALP) Levels
    Total Bile Acids (TBAs)
    Homocysteine

    Note : The only way to be sure that your Liver has no problems is to take a sample and have it checked under the microscope (unfortunately)

    I am well aware that GPs in the UK are very cautious when it comes to having a patient asking for tests.

    If you have your DNA data could you send it over?
     
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  9. meeKO

    meeKO

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    Hi @Ben Howell
    I wish I could offer you some more direction for overall health but on the digestion side of things have you tried enzymes with ox bile? I get one for my wife who just can't eat anything it seems. I THINK it helps. think.
    GNLD Nutrionals Enzyme.
    All the other stuff we're still trying to control without much success :grumpy:
     
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  10. Mel9

    Mel9 Senior Member

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    Hi Ben
    Very sorry to hear you are so unwell
    You are positive for Borrelia
    It is likely that the lack of antibodies means the Borrelia has 'hidden ' well enough to stop your immune system reacting to fight it
    I think you should ask a 'Lyme literate ' doctor to help you with antibiotics to counter the Borrelia
    I have a similar infection with different species (afzelii) but same genus (Borrelia)
    I have been on antibiotics for 11 months and they have made a great difference

    Good luck!
     
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  11. markielock

    markielock staying independent, one day at a time

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    @ahmo I can't emphasize GAPS/'The Stone Age' Diet enough. My diet is far from perfect yet but cutting out grains and introducing Kefir has already had an unbelievable result. I'm starting to become obsessed with fermented foods! Ha ha. @Ben Howell I hope this thread helps you and thanks for starting it: this has given me loads more to look into to tackle my own symptoms.

    You've probably already come across these pages before, but here's some more information on 'the stone age diet' and fermentation in the upper gut, which may give you insights into digestion problems (it certainly did for me!!) - those pages should lead you to a recipe book on there with loads of recipes that should be completely GAPS friendly and also recipes that avoid fermentation in the upper gut.

    http://www.doctormyhill.co.uk/wiki/Stone_Age_Diet_-_this_is_a_diet_which_we_all_should_follow

    http://www.doctormyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS

    http://www.doctormyhill.co.uk/wiki/Recipes_for_Stone_Age_diet

    Hope these help!
     
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  12. Unim

    Unim

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    On low starch diets I would consider supplementing pure dextrose powder (aka glucose powder) as a source of glucose. I just had a quick look and some old SCD diet references state dextrose powder is acceptable, so maybe it would be tolerable on GAPS also.

    I first came across this idea from Paul Jaminet though. Sorry, I can't find where his carb/glucose recommendations are on his Perfect Health Diet website right now, but they may offer a good guideline amount even if you are cutting starches. I think it is about 30% of calories as carbohydrate excluding non-starchy vegetables.

    * * * * * * * * * * * * * * *

    Interesting about the lemon juice. I've had modest success reducing pale BMs by supplementing during meals with lecithin and either milk thistle or artichoke, then taurine and glycine spread inbetween (I worked up to high doses, 3g and 8g total respectively).

    Some of these can affect other things such as mood though; initially lecithin gives me a temporary depression. I don't know if there are potential causes of low bile flow where the above would be a bad idea though.

    If your bile flow is chronically low you may want to avoid predatory fish (eg tuna) in case of mercury content.

    (Edit: Added note I think it is 30% carbs recommended on PHD)
     
    Last edited: Jan 11, 2016
  13. ahmo

    ahmo Senior Member

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    I took ox bile for 2-3 years, recommended for GAPS diet. No longer need it. Healing happens.:balloons:
     
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