Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Please help...health keeps deteriorating...no idea how to stop it

Discussion in 'General ME/CFS Discussion' started by Scoobieworld, Jul 10, 2016.

  1. Scoobieworld

    Scoobieworld

    Messages:
    26
    Likes:
    8
    First of all, thank you for reading this post, I just don't don't know how to stop my health deteriorating and desperately need some help...I'll try and keep my history short, but would welcome any and all advice possible. Thank u.

    I live in uk and got salmonella 20 years, lots of gas, belching and diareeah afterwards. Six months later got the flu and never recovered, had the usual symptons raised glands, exhaustion, light and noise sensitivity etc. Several years later got a diagnosis of ME and health gradually improved over the next 15 years, but had to keep to a strict anti candida diet.

    Four years ago, after moving house, splitting up with boyfriend, dealing with awful builders, I got stomach bug and then started to become intolerant to all foods, starting with carbohydrates. I surmised leaky gut as had a touch of this before but colostrum and nalcrom stopped it in it's tracts previously. This time nothing helped, bone broths and gelatine making things worse. Lost several stone in weight as all I could eat was salmon, cucumber, broccoli and cauliflower. Cameras up and down showed nothing and dictirs just diagnosed ibs.

    I tried all supplements reccomended for leaky gut, nothing's helped. Tried helminth therapy, which seems to have dampened down intolerance reactions to food, but still got the awful fatigue.Tried Sibo antibiotics and diet, no change. I have several dogs, which give me purpose, but if am getting to the stage I can't walk them as I wake in the mornings and all I want to do is stay in bed and rest my aching legs. The exhaustion is second to none.

    I do wonder about MYTHR mutation as I have had miscarriages, stillbirth and babies with chromosome abnormalities. My blood tests always show raised liver enzymes, and it think several times larger than average red blood cells. I have stopped my multivitamin, but don't know what blood tests to ask doctor to perform to validate MYTHR, I think I'd have to pay for 23 and me, to confirm mutation....

    My GP is useless just thinks I'm depressed and it's all in my imagination. I currently just supplement with VSL, but not sure this makes any difference.

    Brain is very foggy, finances limited as on benefits, so reaching out to try and get some advice as to what direction I should take as my health is so rapidly diminishing

    Thank you so much for reading this post, and all your advice would be so very welcome xxx
     
  2. justy

    justy Senior Member

    Messages:
    5,132
    Likes:
    11,074
    U.K
    Hi Scoobie - s sorry to hear of your declining health. Some of what you write gets little alarm bells ringing for MCAS. This can have a stepping up type history. Events such as stress, illness etc can cause an increase in the issues with the illness and increase in severity. A lot of people with ME have MCAS.

    The gut issues could be related to this and getting worse with bone broth etc would make sense if you had MCAS. Its a devilishly difficult disease to diagnose and treat. Do you have EDS by any chance? flexible joints? hypermobility?

    MCAS is VERY common in people with EDS and M.E - no one knows why yet. EDS can also cause stomach issues.

    I have M.E, EDSIII, Lyme disease, co infections and MCAS - its a shitstorm of issues to try and overcome, and can leave you increasing sicker over time.

    I suggest getting hold of Dr Afrin's Never bet against Occam - its available on Amazon as a hardcover book or kindle edition.

    The things that made wonder this with you are - food intolerances, gut issues made worse by bone broth, large red blood cells and irregular test results that GP's cant find a reason for. There has been some research recently suggesting that MAST cell are aberrant in people with moderate and severe M.E. But it was a small sample size and not much more is know yet.

    Treatment consists of finding th right combo of H1, H2 blockers, mast cell stabilisers, supplements etc. It can take a very long time, even with the right Dr to find a combo of drugs that will help.
     
  3. hellytheelephant

    hellytheelephant Senior Member

    Messages:
    837
    Likes:
    4,111
    S W England
    Hi @Scoobieworld- so sorry to hear all that you have been and are going through. Is it possible to see another Dr at the same practise? Even if there are no immediate or easy answers, it is important to see someone you can trust and who treats you as an adult. I am making the presumption that you are in UK (?) in which case your local ME support group should have a list of GPs who understand ME( and related issues), in your area.

    Hx
     
  4. taniaaust1

    taniaaust1

    Messages:
    11,870
    Likes:
    12,563
    Sth Australia
    With your miscarriages and still birth history you do need to be tested for the MTHFR mutation. I myself have a double copy of that and due to this have a daughter with an issue which is similar to spina bifida which could of been prevented had I been taking the right form of folate for this during pregnancy rather then the wrong form of it for me. Miscarriages with this may be prevented too by taking baby asprin during pregnancy so do keep on trying to get this test.

    I have this showing on both my 23andME testing and my previous MTHFR testing done at the doctors. The MTHFR testing I had done at doctors was part of a blood panel for clotting disorders (so tested a range of about 5 different things, maybe that would be even better with your history).

    I suggest for you to ring your local blood lab and see what blood testing for MTHFR they do (most labs I think now days do have testing for this). You also could try to do a search for MTHFR and doctor and your area to see if there is a dr who specialises in this where you live.
     
    Last edited: Jul 10, 2016
  5. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,212
    Cincinnati, OH, USA
    Couple of ideas:

    Have you done a stool test to see what bad bugs are creating problems in your gut? The test results will tell you what specific things will be effective against the bad gut bugs that you have. Otherwise you're just guessing and may not have taken the right thing.

    See my signature link for info about the 4R Gut Rebuilding Program. You have to do all four steps, not just some of them.

    If you feel like you have that covered, then look at mercury toxicity. See my signature link for Cutler frequent dose chelation and the right hair test to get and how to get it correctly interpreted. Mercury can cause gut issues such as candida and leaky gut (and many other issues outside of the gut).

    If you do have mercury toxicity, you may not be able to get the gut issues resolved with a gut program and may need to be on an herbal anti-fungal constantly, and keep rotating to a new one when the old one wears out. I used to rotate between caprylic acid, grapefruit seed extract and cat's claw. Each one would last about a year, then symptoms would come back and I'd switch to the next one, and eventually back to the first one.

    About a year and a half after I got my last mercury filling out, my leaky gut/candida resolved and I don't need the anti-fungals any more.

    It sounds like MTHFR might be in the mix somewhere. Mercury will cause a block in that enzyme even if you don't have mutations. If you do have MTHFR mutations and mercury both, it's like a double whammy. And then when MTHFR is slowed, you don't detox well and even more mercury can accumulate - that can cause a vicious downward cycle.

    Methylation treatment might be at least somewhat helpful. But if you do have mercury, ultimately getting that out is what should be most helpful.

    Note if you have low methylation, you might have high histamine. So methylation treatment may also be helpful for histamine issues.
     
  6. Scoobieworld

    Scoobieworld

    Messages:
    26
    Likes:
    8
     
  7. Scoobieworld

    Scoobieworld

    Messages:
    26
    Likes:
    8
    Hi Caledonia
    Thanks for the reply, I doubt I have Mercury poising from filings, but eat a lot of tinned salmon, so might be worth checking out. I saw one of your posts, but lost where it was ..., about the higher effects certain ssri's have on mfthyr . I take citalprom, which you said effected myconchridia ( spelt completely wrong). I take citalapram at heightens Dose, could you put me in touch with the article and sorry can I ask what detrimental effect it could have ??? Sorry got being do inept on here xxx
     
  8. Scoobieworld

    Scoobieworld

    Messages:
    26
    Likes:
    8
    I can try another doctor and probably will do as I feel terrible am virtually housebound now.., not sure what blood tests j should ask for, I'm sure the nhs don't do mfthr testing!!!
     
  9. Mary

    Mary Senior Member

    Messages:
    2,561
    Likes:
    5,454
    Southern California
    @Scoobieworld - I'm guessing that your several times larger than average red blood cells showed up on a test called MCV - mean corpuscular volume. If this number is elevated (meaning larger than normal red blood cells), it can indicate a B12 and/or a folate deficiency (or a few other things as well). If you are deficient in either B12 or folate, it can make you very tired and cause brain fog. I wasn't familiar with miscarriages and the MTHFR defect but it appears they can be related.

    My MCV number was borderline high - near or at the top of the normal range, and no one said a word to me about this being a problem for many years until one doctor did. And I started methylfolate (already had been taking methylB12 for years) and my energy picked up noticeably. I recently switched to a liquid form of MB12 and increased my dose as well, and I'm doing better on that.

    I don't think you need to have the 23 and me test done in order to try B12 and folate. Read about elevated MCV. I did read one thing which said an elevated MCV could be due to liver problems, and your enzymes are elevated, but I would try the simplest things first. But whatever you do, start low and go slow.

    Also I would read what Freddd has to say about potassium and methylation: http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/

    My potassium tanked quite badly a couple of days after I started the methylfolate (chief symptom was severe fatigue) but fortunately I had read about this possibility ahead of time and was able to titrate up gradually to 1000 mg. potassium a day and that horrible fatigue went away.
     
  10. Mary

    Mary Senior Member

    Messages:
    2,561
    Likes:
    5,454
    Southern California
    @Scoobieworld - one more thing - re your elevated liver enzymes - that could be due to the citalopram: see http://www.livestrong.com/article/545734-depression-elevated-liver-enzymes/

    Also are you on any other drugs? So many of them can affect the liver.

    And if your B12 is low, that can cause depression. I think doctors just way too easily hand out drugs when there are so many nutritional things that can be done to help one's mood. (e.g., 5-htp, fish oil, B12, to name a couple)
     
  11. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,212
    Cincinnati, OH, USA
    SSRI's can ironically deplete B vitamins which are needed to make neurotransmitters. I do see Citalopram on the list of psych drugs that harm the mitochondria.

    Check this out:
    http://psychrights.org/research/Digest/NLPs/DrugsCauseMitochondrialDamage.PDF

    I
    f you do decide to get off your medication at some point, you will need to taper off, and will likely need to taper off very very slowly to avoid a bad withdrawal syndrome. The Surviving Antidepressants forum has a good taper protocol which is similar to the one I'm doing. There is a way to test things out first to see if you're one of the sensitive ones.

    Note it may take several years to get off these drugs safely. As an example, I'm 3.5 years into a 5 year taper from Zoloft.

    My suggestion would be to look at other causes of fatigue that are simpler and quicker to treat first, such as vitamin and mineral deficiencies, thyroid, adrenals, mitochondrial supplements, etc.

    Chelation is another long term prospect. Probably at least 2 years.

    Mercury can come from many sources, not just fillings - first you will acquire 60% of your mother's body burden in the womb. So did your mother have mercury fillings? If you're younger you will have likely gotten a whole bunch of vaccines containing thimerosal (mercury). Do you live near any coal fired power plants or crematoriums? Eat a lot of tuna (you said yes for salmon, so maybe there). Played with mercury as a kid? Cleaned up any broken fluorescent tubes or bulbs? and so on....

    There are other metals that can kill energy - lead and arsenic. I have all three - mercury, lead and arsenic :eek:

    Again there are multiple sources for these. You may not know where they came from or realize you have them until you test. I don't know where my arsenic came from...
     
  12. Scoobieworld

    Scoobieworld

    Messages:
    26
    Likes:
    8
    Hi Mary
    Thank you for your easily understood explanation, I am so mentally confused for some reason!! Okay so think I should get doctor to do another MCV,B12 and folate blood tests as well as liver enzymes repeated ( I've had an ultrasound of liver Snd nothing untoward showed up) is there anymore blood tests I should ask for off the top of your head? I have tried to reduce dose of citalapram, but become very tearful as an so low due to my physical health. I take zopiclone st night. Thank you so much for your advice, it's very hard when you feel so ill on your yo know what direction to go in
     
  13. Scoobieworld

    Scoobieworld

    Messages:
    26
    Likes:
    8
    Oh thank you calendionia, do you know the best way to reverse mitochondrial damage caused by these ssri's ??? Sorry I don't know what chelation is?? Thank you so much for your help x
     
  14. Mary

    Mary Senior Member

    Messages:
    2,561
    Likes:
    5,454
    Southern California
    1. Yes, if at all possible I would try to see a different doctor. Your current doctor seems to be fine with elevated liver enzymes and with "several times larger than normal red blood cells" (I'm assuming you had a high MCV test) which is not good at all. When were your last tests done? It would be good to get a copy of your blood work and take it to the new doctor. I would also print out some info about the high MCV and possible corresponding B12 and/or folate deficiency. Your first doctor seems unaware of this so your second may very well be too. Unfortunately, most of us have to in essence be our own doctors. We educate ourselves and then pass on what we learn to the doctors. Most of them know very little about nutrition and generally just hand out drugs for symptoms instead of getting at root causes and the drugs almost always cause unwanted effects. So you can get the blood work done again, but I would be prepared with your own info and not expect the doctor to know what's going on. Many of us end up essentially treating ourselves. the really fortunate ( but rare) ones have a good doctor to help.

    2. The Zopiclone could be causing some of your nervousness, depression etc: Look under "Precautions" in the middle of the page (https://www.drugs.com/cons/zopiclone.html)

    3. If your liver enzymes are still elevated, it may be due to the citalopram. I understand you think you need this. However, if part of your problem is low B12 and/or folate, then quite possibly you could start to get off of the citalopram because your mood and energy should pick up with B12 and folate, if they are an issue. Also, again, your depression etc. may be linked to the Zoplicone (these names! who thinks them up?!) It (the Ziplicone) is only supposed to be used short term. There are lots of non-drug things which help with sleep. And there are lots of non-drug ways to deal with mood.

    4. Don't expect your doctor to know anything about side effects. Most don't seem to.

    5. I would also look into the things Justy suggested. I don't know anything about MCAS but she does. And Caledonia knows a lot about methylation and other things. I'd read what they both said carefully.

    6. You might do a thread asking if someone in the UK knows of a good ME doctor, or just a good doctor period. There are many people from the UK on this board. Be prepared that most docs will think its all in your head and you most likely will have to be your own advocate and researcher and experimenter.

    7. Always read about a drug before taking it. Read the fine print about side effects etc.

    Take care -
     
  15. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,212
    Cincinnati, OH, USA
    The primary thing would be to remove the thing which is causing mitochondrial issues - i.e. get off the drug. That's why I gave that long caution about how to taper off the right away. I've already been through the mill on this with a horrendous withdrawal syndrome that lasted the better part of a year, and wouldn't want anybody to suffer what I did. Doctors don't know about this.

    Other than that, you can try any of the various mito supplements such as CoQ10, magnesium, ribose, etc. (you can google for what they are). Things that help cell membranes may also be helpful - i.e. doing an "oil change" if you eat vegetable oil and transfats - switch to olive oil, coconut oil, real butter, etc. Supplement with essential fatty acids/omega 3's such as molecular distilled or pharmaceutical grade fish oil (so you don't get mercury or PCB's with it). NT factor which contains phospholipids is another possibility.

    Chelation means removing toxic metals from your body. You take a supplement such as alpha lipoic acid (a chelator) and it pulls the metals out (along with minerals so you need to supplement with those while chelating).

    The "ch" is pronounced with a hard sound like a "k". So it's pronounced like key-lay-shun and key-lator.

    I agree with Mary - the enlarged red blood cells suggest a B12/folate deficiency and that may be the reason you're having anxiety/depression or whatever the Citopralam was prescribed for and also the insomnia the Zoplicone was prescribed for.

    If you decide to get off these drugs, my suggestion would be to get any B12/folate deficiency treated first, then check out the Surviving Antidepressants forum for help in tapering off both of them.
     

See more popular forum discussions.

Share This Page