1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Time Change Equals Jet Lag, ME/CFS Style
Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks ...
Discuss the article on the Forums.

A Question To All ME/CFS Suffer's

Discussion in 'General Symptoms' started by AndrewB, Jul 23, 2011.

  1. Countrygirl

    Countrygirl Senior Member

    Messages:
    765
    Likes:
    411
    UK
    [/QUOTE]

    Hi Andrew,

    Yes, that would be a good idea. Alternatively, as I am a national contact for ME charities and my phone number is public property anyway:D you could PM me your landline number and we could talk on the phone.

    One useful tip that helps you know whether you have ME is to drink a glass of red wine. It is estimated that 92% of people with the illness react very badly to it. If it doesn't make you noticeably worse (the reaction varies in people) it is probably safe to say that it is unlikely that you have ME. The same is true for buspione, which was used as a test for ME in my local hospital.

    I would be wary of zopiclone. I have just discovered that it has been the cause of my mysterious sleepwalking for the past ten years. There are alternatives which are more effective in my experience.

    All the best,

    C.G.
  2. Deatheye

    Deatheye Senior Member

    Messages:
    160
    Likes:
    18
    One useful tip that helps you know whether you have ME is to drink a glass of red wine. It is estimated that 92% of people with the illness react very badly to it.
    C.G.[/QUOTE]

    What actually is the normal and the abnormal reactio to alcohol? i started to wonder about that since I first read it. The longer I'm fighting with this the more I notice that some stuff that just was normal to me seems to be seen as an abnormality / sympthom. But I got used to stuff cause i had it so long I totally forgott that this is not normal.
  3. aprilk1869

    aprilk1869 Senior Member

    Messages:
    294
    Likes:
    57
    Scotland, UK
    Andrew, B12 deficiency has already been mentioned above however I just want to mention it too. Last year my dad started getting nerve pains and nobody could figure out what was wrong with him. His b12 measured as 364 and he was told this was normal. Over the months he started developing more and more symptoms such as insomnia, hot/cold sweats and sensitiity to light/temperature/sounds. It was only when I found Freddd's protocol and got him to take all the supplements that my dad started to get better.

    Muscle twitching is also a symptom of magnesium deficiency.

    Current protocol/list of supplements:-
    http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics

    List of b12 deficiency symptoms:-
    http://forums.phoenixrising.me/showthread.php?188-B-12-The-Hidden-Story&p=1482&viewfull=1#post1482
  4. AndrewB

    AndrewB Senior Member

    Messages:
    121
    Likes:
    13
    England, UK
    Hi countrygirl,

    I'll post you my number, my phone is downstairs and im in bed, so i may need a few days to be up and about to take calls, im really poorly at the moment, my legs are giving way on me today, and im really confused today, i didnt get any sleep and im basically shattered.
    Heres a complete list of what im feeling ;

    Debilitating Fatigue
    Running hot/cold. worse at night.
    Pain in odd areas
    Joint ache
    Muscle ache, mainly arms and legs.
    Difficulty breathing
    Muscle twitching, arms and legs.
    Confusion and poor memory.
    Feeling sick, no appietite
    Headaches
    Numb feet and hands
    Cant tolerate any alcohol drinks, brings on fatigue
    Sore throat, feels like my throat is swollen sometimes,
    unpleasent trying to swallow.
    Over senstive to bright lights, not everyday, mostly when ive had a very restless day/night before.
    My eyes seems 'dry' if that makes any sense?
    Constipation/Diarrhea, let me explain this one, i'll be unable to go to the toilet much for say two, even three weeks,
    and then it'll reverse itself and i'll be having to go all the time.
    Voice pitch change, to me it sounds like ive got a sore throat, to others, they say my voice has gone higher in pitch, this is mostly,
    but not always, when i have a sore or swallon feeling in my throat.
    Cant be around people smoking, it seems to make me feel more fatigued.
    Ive noticed my hands and feet are often 'white' looking, and when im really ill like now and the past four weeks i get very pale in the face.
    Loud noise unsettles me, its a strange feeling but i get easily jolted now, odd given that i was a music promoter and have been to literally
    thousands of shows over the last 14 years.
    Depression, this is due to being stuck in the house and my bed. I know it is, because when im able to go out i dont feel depressed at all.
    Panic Attacks, mainly in cars, the speed and movement seems to cause this, as if i cant see out the windows, its not so bad.


    Ive been having to re-check the list as im writing as ive been forgeting what ive wrote, my short term memory is astonishingly poor today,
    so im sorry if ive missed anything out countrygirl.

    Andrew
  5. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,256
    Likes:
    1,625
    London
    North Manchester General Hospital. Dr Pattrick / Dr Snowden, Rheumatology Department.
    Tel. 0161 720 2622. Oldham, Bury, Rochdale, Tameside & Glossop, Stockport and Manchester PCT areas covered. Dr Pattrick will also see patients privately.

    ==============================================


    Manchester ME Society
    Louise Ellis
    manchestermesociety@yahoo.co.uk
    07984 756221
    After 13.00 only

    ===============================================

    Andrew, couple of quick questions if you are able. If not, pls don't worry.

    What happened to you before you became ill? i.e. was there a virus, operation, accident - anything out of the ordinary.

    what diseases run in your family?

    What was your health like before?
  6. AndrewB

    AndrewB Senior Member

    Messages:
    121
    Likes:
    13
    England, UK
    Hi ukxmrv,

    i had a chest infection that wouldnt go away, i was given three courses of antibiotics, but it never seemed to leave me.
    The hostpital told me that my shortness of breath was due to the infection, in part that may have been true, but i really couldnt breathe, it was worse than anything
    id had before.
    I think thats where the increased white blood cell count was from, but i must stress, i wasnt given antibiotics until id had the bloodwork done.
    I had asthma as a child, but its not been a major factor in adult life. And this shortness of breath definately is not asthma, the two feelings
    are completely different.
    My GP has me on record as having Anxiety Disorder, because of the panic attacks i get, but i never had them until i was ill last year.
    Thyroid and heart conditions run in my family, on both sides actually, but my GP said my blood tests had shown no signifficant inflammation, so he ruled out
    thyroid trouble, and i has an ECG and my heart is fine.
    He did test my kidneys and liver in the bloodwork, he told me this, and again, no apparent problems there.
    He cant explain any of my symptoms, especially the extreme extent of my fatiuge, which is why he's shipped me off to a general specialist.
    Other than the chest infection, i did work very hard last year, i was out touring with bands and its stressful time consuming work.
    But ive always been able to thrive off hard work before so i doubt it was the stress.

    Andrew
  7. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
    Hi, Andrew.

    Your experience prior to the onset of your illness and your list of symptoms correspond very well to ME, in my opinion. It sounds as though you had an infectious onset. Perhaps your resistance was down, and you got an infection, perhaps with Chlamydia or mycoplasma, given that it was a chest infection. Have you been tested for them? As your immune system attempted to combat the infection, perhaps your glutathione became depleted. According to the glutathione depletion--methylation cycle block hypothesis for ME, if glutathione becomes depleted in a person who has inherited the genomic predisposition, this results in a functional B12 deficiency, which in turn causes a partial block in the methylation cycle, followed by draining of folates from the cells. This develops into a vicious circle mechanism, and that is what makes ME a chronic disease.

    If this is what has gone on in your case, here are the explanations for the symptoms you reported:

    Debilitating Fatigue--The glutathione depletion and methylation deficit cause dysfunction of the mitochondria, and the resulting lowered rate of production of ATP results in fatigue.

    Running hot/cold. worse at night--The hypothalamus suffers from glutathione depletion and loses its ability to properly control the body temperature. The ongoing infection causes cytokine-induced fever. Low total blood volume makes it difficult to regulate heat loss via the skin.

    Pain in odd areas--The nervous system is also affected by the glutathione depletion.

    Joint ache--This may result from the infectious agent.

    Muscle ache, mainly arms and legs--Again, both the muscles and the nerves are impacted by glutathione depletion.

    Difficulty breathing--The muscles used in breathing suffer from the mito dysfunction, which is caused by the glutathione depletion and methylation deficit.

    Muscle twitching, arms and legs--Likely due to low intracellular magnesium, caused by glutathione depletion which lowers ATP supply to the membrane ion pumps.

    Confusion and poor memory--The brain is impacted in several ways. This likely involves the hippocampus.

    Feeling sick, no appietite--Cytokines likely cause the sick feeling. The digestive system is impacted in several ways. Low stomach acid production and resulting low motility likely causes the loss of appetite. Mito dysfunction in the parietal cells likely causes the low stomach acid production.

    Headaches--Several possible factors. Blood flow to the brain is usually lowered.

    Numb feet and hands--Likely due to the functional B12 deficiency.

    Cant tolerate any alcohol drinks, brings on fatigue--Ethanol worsens the oxidative stress that is present because of the glutahione depletion. It also worsens hypoglycemia and lactic acidosis that results from the anaerobic nature of the metabolism when glutathione is depleted.

    Sore throat, feels like my throat is swollen sometimes--Likely due to the ongoing infection and efforts by the immune system to combat it. The immune system is unsuccessful, because it is dysfunctional as a result of glutathione depletion and draining of the folates from the cells. This is particularly important for viruses and for intracellular bacteria, such as Chlamydia and mycoplasma, which require a Th1 immune response.

    unpleasent trying to swallow--Ditto.

    Over sensitive to bright lights, not everyday, mostly when ive had a very restless day/night before--Likely due to excitotoxicity, in turn due to glutathione depletion.

    My eyes seems 'dry' if that makes any sense?--Due to low total blood volume, which in turn is due to low secretion of antidiuretic hormone producing diabetes insipidus (not to be confused with diabetes mellitus), in turn caused by glutathione depletion in the hypothalamus/pituitary.

    Constipation/Diarrhea, let me explain this one, i'll be unable to go to the toilet much for say two, even three weeks,
    and then it'll reverse itself and i'll be having to go all the time--This is irritable bowel syndrome (IBS). The gut is impacted in several ways by the vicious cycle described above, and most people with ME have problems with their digestive system as a result.

    Voice pitch change, to me it sounds like ive got a sore throat, to others, they say my voice has gone higher in pitch, this is mostly,
    but not always, when i have a sore or swallon feeling in my throat--Again, I think this is due to the ongoing infection and the immune system's unsuccessful response to it.

    Cant be around people smoking, it seems to make me feel more fatigued--The detox system is dysfunctional because of the vicious circle. Inhaling smoke brings in toxins.

    Ive noticed my hands and feet are often 'white' looking, and when im really ill like now and the past four weeks i get very pale in the face--Low total blood volume, as discussed earlier.

    Loud noise unsettles me, its a strange feeling but i get easily jolted now, odd given that i was a music promoter and have been to literally
    thousands of shows over the last 14 years--Again, excitotoxicity.

    Depression, this is due to being stuck in the house and my bed. I know it is, because when im able to go out i dont feel depressed at all.--Right on.

    Panic Attacks, mainly in cars, the speed and movement seems to cause this, as if i cant see out the windows, its not so bad.--Due to excessive production of epinephrine (adrenaline). The dysfunction of the HPA axis causes low secretion of cortisol, and epinephrine rises in an effort to compensate, but produces side effects, including panic reactions.


    So I think this explanation is consistent with what you are experiencing. There is a test panel that will tell whether you have this vicious circle mechanism going on, called the methylation pathways panel. Unfortunately it is a specialty panel, not a conventional one, and it is available in Europe only at the European Laboratory of Nutrients in the Netherlands and in the U.S. at the Health Diagnostics and Research Institute in New Jersey.

    If this vicious circle is present, there are several methylation cycle treatments being used that can be helpful. The protocol I have suggested is pasted below.

    I hope this is helpful.

    Best regards,

    Rich

    March 30. 2011

    SIMPLIFIED TREATMENT APPROACH
    FOR LIFTING THE METHYLATION CYCLE BLOCK
    IN CHRONIC FATIGUE SYNDROMEMarch 30, 2011 Revision
    Rich Van Konynenburg. Ph.D.
    (Based on the full treatment program
    developed by Amy Yasko, Ph.D., N.D.
    which is used primarily in treating autism [1])

    SUPPLEMENTS

    1. General Vitamin Neurological Health Formula [2]: Start with tablet and increase dosage as tolerated to 2 tablets daily
    2. Hydroxy B12 Mega Drops [3]: 2 drops under the tongue daily
    3. MethylMate B [4]: 3 drops under the tongue daily
    4. Folinic acid [5]: capsule daily
    5. Phosphatidyl Serine Complex [6]: 1 softgel capsule daily (or lecithin, see below)

    All these supplements can be obtained from http://www.holisticheal.com.
    The fourth supplement comes in capsules that contain 800 mcg. It will be necessary to open the capsules, dump the powder onto a flat surface, and separate it into quarters using a knife to obtain the daily dose. The powder can be taken orally with water, with or without food.
    These supplements can make some patients sleepy, so in those cases they take them at bedtime. In general, they can be taken at any time of day, with or without food.
    Phosphatidyl serine can lower cortisol levels. Patients who already have low evening cortisol levels may wish to substitute lecithin [7] (at one softgel daily) for supplement number 5 above. Lecithin is also available from http://www.holisticheal.com.
    For those allergic to soy, lecithin from other sources is available.
    GO SLOWLY. As the methylation cycle block is lifted, toxins are mobilized and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
    Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.

    [1] Yasko, Amy, Autism, Pathways to Recovery, Neurological Research Institute, 2009, available from http://www.holisticheal.com or Amazon.
    [2] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
    [3] Hydroxy B12 Mega Drops is a liquid form of hydroxocobalamin (B12), supplied by Holistic Health Consultants. 2 drops is a dosage of 2,000 mcg.
    [4] MethylMate B is a liquid form of (6s)-methyltetrahydrofolate supplied by Holistic Health Consultants, based on Extrafolate S, a trademark of Gnosis S.P.A. 3 drops is a dosage of 210 mcg.
    [5] Folinic acid is 5-formyltetrahydrofolate. capsule is a dosage of 200 mcg.
    [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center. 1 softgel is a dosage of 500 mg.
    [7] Lecithin is a combination of phospholipids without phosphatidylserine. One softgel is a dosage of 1,200 mg.
  8. AndrewB

    AndrewB Senior Member

    Messages:
    121
    Likes:
    13
    England, UK
    Hi richvank,

    thank you for your response, its a long read and im going to need to re-read it before it starts to sink in.
    normally id be able to digest the info but im really struggling today taking things in.
    can i ask, do you take the supplements you recommended, and could you tell me your precise experience with them.
    ive ordered some Vit-B12 5000mg that are supposed to desolve in the mouth, i was also told to get hold of VitB9 but i
    couldnt find any and i dont know how much id need to take of it, but i did read that without B9 the B12 wont bind and will
    just scurry through my blood stream, again, i dont know all the info on it yet, its been a steep but essential learning curve.

    Andrew
  9. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
    Hi, Andrew.

    I don't have M.E. myself, so I haven't personally used this protocol. I'm a researcher. We have done a clinical study of it, however. You can find the report here:

    http://www.mecfs-vic.org.au/sites/w...Article-2009VanKonynenburg-TrtMethylStudy.pdf

    I gather that you are referring to sublingual B12. That's the route we have recommended in our protocol.

    Vitamin B9 is folate, and it's correct that B12 and B9 must be taken together to lift the partial block in the methylation cycle. It's also important to use the chemically reduced forms of folate, rather than the more common folic acid. Methylfolate is the most important. Folinic acid, in addition, is helpful to at least many people. The amounts are listed in the protocol.

    Best regards,

    Rich
  10. Countrygirl

    Countrygirl Senior Member

    Messages:
    765
    Likes:
    411
    UK
    Hi Andrew,

    I've PM'd you.

    Sounds like a classic case of ME to me, Andrew.

    Richvank, thank you for that brilliant and very helpful post.

    C.G.
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    324
    Southern USA
    I think we have to remember how seratonin drops with illness and stress. Causes so many symptoms. Taking 5HTP has been great for noise sensitivity and many symptoms. I also take many other symptoms. A good doc can help with the testing and amount and brand.
  12. justy

    justy Senior Member

    Messages:
    2,321
    Likes:
    1,919
    U.K
    Hi Andrew, just a quick post to welcome you to the forum -although im sorry we have to meet this way.
    Sounds like M.E to me, but it is very worthwhile ruling out as much as possible, as others have said many people are misdiagnosed. It took me 16 years to get a diagnosis and in the end i had to pay for it.
    I had testing done through Dr Myhills website and have followed her advice for about 14 months and am improving slowly. You do dnot have to go and physically see her to have testing done, you do have to pay and she writes a letter to your GP explaining the results, i found it really useful and have since been to see her for a private consultation.
    Website here
    http://www.drmyhill.co.uk/wiki/Summary_of_my_approach_for_CFS_/_ME_sufferers.

    I had the Mitochondrial profi;le function test done.
    Take care, Justy x
  13. anniekim

    anniekim Senior Member

    Messages:
    583
    Likes:
    183
    U.K
    Andrew, the NHS Me clinics vary (those who aggressively push cbt and graded exercise should be approached with great caution) but I think they can be good to get you a diagnosis. A clinic that does not push cbt and graded exercise will not be able to offer you a cure, far from it, but they can confirm diagnosis (which will help with claiming sickness benefits etc and validation that you are physically ill - provided they are not one of the ones who push the psychological paradigm, they don't all do this, thankfully) offer symptom relief for pain, sleep etc and advice on pacing.

    If you go onto the Me association website, you will be able to find out which is your nearest nhs me/Cfs clinic. Once you have the details (and I think a poster may have already given it) you can ask your GP for a referral
  14. WillowJ

    WillowJ Senior Member

    Messages:
    2,851
    Likes:
    2,193
    WA, USA
    Hi Andrew,

    I'm sorry, I think i confused you. I meant the day after you overdo/exercise we usually have more things that get worse specifically from overdoing it (not that you needed more symptoms overall--you do have a lot! and it's normal for us to have too many to remember). However, getting a chest infection and then getting what you have, sounds a lot like it could be ME or some kind of post-viral fatigue syndrome .

    best,
    willowj
  15. AndrewB

    AndrewB Senior Member

    Messages:
    121
    Likes:
    13
    England, UK
    Hi willow

    today someone in my family made me a steak and eggs dinner. i couldnt chew the meat, it was making my jaw muscle too tired to eat.
    also, the simple task of cutting some steak made both my arms stop working. and by that, i mean i could barely lift them off the bed.
    if i rest for hours, im able to type a few emails, but thats the extent of my mobility at the moment.

    Andrew
  16. WillowJ

    WillowJ Senior Member

    Messages:
    2,851
    Likes:
    2,193
    WA, USA
    I'm sorry to hear this. too tired to chew happens to me, too. it's difficult.

    If you are able to get some electrolyte drink (preferably something safe; I use vitalyte and it looks like this might be available under the same name in the UK), that might help. even if not, make sure to stay hydrated and use salt if your blood pressure seems low (if you don't have a blood pressure cuff, you can tell if you're getting head rushes or too dizzy to stand). resting is good, too.
  17. markmc20001

    markmc20001 Guest

    Messages:
    877
    Likes:
    80
    Hey Andrew welcome aboard!

    One of the most important things I do to help my health is watch my diet. Reduce/Avoid alcohol, refined sugar, preservatives, trans-fats, corn syrup, try to eat whole foods instead of stuff out of a box or can if possible. Get some veggies. It's hard but might help some.

    Caffine is a biggy for me, some people don't seem to think it is a problem. At the very least consider trying green tea instead of lots of coffee.

    Consider drinking filtered water free for metals, chlorine, and flouride.

    ANother thing is you mentioned you are taking a medication. I'm not familiar with that one, but I try and avoid unecessary medications whenever possible.

    The general idea is to reduce the burden on your immune system.

    I take lots of vitamin C(3 grams a day), and milk thistle. Those are pretty safe and can help some basic stuff. Vitamin C help with lots of stuff. Milk thistle can help the liver repair, (which can affect appetite and constipation.) Pretty good stuff, might help you if your situation is related to that medication.

    I would consider looking in to lyme disease too. I went to a support group, and many of the symptoms people reported sounded like my problems. They had many good ideas to work off of.

    Not sure how you deal with stress, but good idea to adjust to your situation and not get too stressed over being sick. easier said than done, but stress can be toxic.

    Mark

    PS: chicken or turkey is probably a better option than red meat.

    One more thing. Acidophilous from yogurt or fermented foods can be very helpful.

    When my apetite is weak, I drink a (goat if you have issues with milk) yogurt smoothie. 1 bannana, 1/2 yogurt, 1/2 cup almond or soy (milk), couple frozen strawberries, blueberries, or whatever is cheap and in season.(you like). Makes a pretty decent breakfast that is easy to make and easy to get down.

    I've been pretty close to where you are at, and it's not fun. My problem was I had taken too much vicodin which might have burdened my liver and stomach. I have a bacterial infection on top of that.
  18. AndrewB

    AndrewB Senior Member

    Messages:
    121
    Likes:
    13
    England, UK
    Hi markmc20001,

    I know what you mean about caffine, although i wasnt sure i was right, i think it does effect me. I used to drink lots of both coffie and tea, and now although i do want a cup of tea, i know it'll will make me feel slighty worse. Im trying to eat well too, but thats not easy when you cant walk around, im eating fruit, taking Vit C and drinking a protein drink called 'Dunn's River Nurishment', as i had a real hard time yesterday eating a steak, so when im this ill, i try and make sure i get some goodness into my body.
    Im trying to drink as much water as i can, again movement is a problem, but im filling up a one and a half litre bottle of water everyday at least once with filtered water (carrying it on the other hand is a huge task), apart from anything else i find filtered water tastes much better.

    Andrew
  19. justy

    justy Senior Member

    Messages:
    2,321
    Likes:
    1,919
    U.K
    Hi Andrew, ive been following your thread and im sorry to hear just how sick you are. I know someone else has mentioned it above but i think its worht reiterating that if you do have M.E (sounds very much like you do) then you need to rest, rest, rest. I know you cant do much else right now anyway but its so important not to push yourself at all if possible. Total complete rest until you start to feel a bit better is very importnt (this can take months) recovery from M.E to at least a much better standard of health is possible but it does take time and patience. Please also factor in talking, reading, computer etc as being activities that you mustnt overdo at first.

    The top things that have helped me to improve on the past year are:
    Pacing
    Rest
    Relaxation/ meditation
    supplements -(specifically based on my mitochondrial function test)
    diet (stone age/paleo/candida)
    candida cleanse
    reducing my overall toxic burden i.e no smoking no perfumes or chemicals in the home or on my body etc including shampoos and cleaning products such as washing powder.
    Takie care Andrew, Justy x
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,404
    Likes:
    4,133
    Sth Australia
    Things exactly like what you described here.. make it quite clear that your issue isnt something like just depression and the "tiredness" depressed patients feel (It's things like this which make me wonder how on earth doctors can confuse the two). Having trouble chewing isnt uncommon in ME. It would be better for you if you choose soften foods rather then expending energy needlessly and wearing yourself out trying to cut meat and chew.

    best luck

See more popular forum discussions.

Share This Page