The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Mysterious Undiagnosed Illness-seeking advice, suggestions and stories!

Discussion in 'General Symptoms' started by Booksellercate, Jun 23, 2017.

  1. Booksellercate

    Booksellercate

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    Hi, I'm wondering if anybody recognises my experience and can offer any insight or advice. I'll try to be as to the point as I can.


    I became suddenly very unwell in early 2016 and cannot seem to recover. From being very active and seemingly reasonably healthy I have become housebound and unable to work with a range of debilitating symptoms which I cannot seem to shift. The NHS has thus far not found any serious illness. Realising that the doctors knowledge was limited beyond textbook illnesses, I have started to seek my own answers. I am exploring a number of possibilities-including ME, CFS (which was suggested by one neurologist I saw), nerve damage from B12 deficiency, Lyme and metal toxicity. I joined this group on a recommendation to learn more about these illnesses, to hear how others have diagnosed, and which treatments -both medicinal, nutritional and therapeutic-have helped. I currently have little support from doctors so I'm doing what I can to learn and to help myself.


    I've outlined my story so far below.


    Background – I'm a 36 year old female and have been a vegetarian most of my life. I eat yoghurt, cheese and milk/fortified nut milk daily/regularly. I've supplemented with multivitamins such as Berocca on and off during adulthood. For a few years I realise I haven't felt quite right. Extreme tiredness and brain fog have slowly crept up on me. I put it down to overworking and not sleeping well. Around 4-5 years ago I started to have serious issues with my bladder – urinary urgency and frequency, throughout the day and night. I needed to use the toilet up to 30-40 times a day. I think I was close to incontinence. My hair started to thin. I've also had digestive problems-frequent bloating, loss of appetite and inexplicable nausea. Low blood pressure has also been commented on a few times in the past.


    March 2016 – I experienced an acute onset of severe neurological symptoms. I was out shopping one day and it was like a switch had flicked. I was suddenly severely lightheaded, faint, weak, my balance was gone. I left the supermarket to go home as I felt so unwell. Walking back to my car, I only just made it across the road as my legs were so weak and went numb. I collapsed by the side of my car.


    Symptoms –

    (neurological):

    leg weakness

    generalised flu-like weakness

    faintness

    chronic fatigue

    brain fog

    vertigo

    light sensitivity

    disturbed vision

    tingling/weakness in left arm

    urinary urgency and frequency

    balance issues

    strange sensations when walking

    tinnitus

    generalised flu-like weakness.

    (Other):

    low blood pressure

    orthostatic hypotension

    gastrointestinal issues

    hair loss

    joint pain

    sallow skin

    dry skin/nails


    Medical Investigations – A full blood count was ordered in March 2016. This was closely followed by a B12/folate test. I was displaying mild macrocytosis, nucleated red blood cells. My B12 level was 243. I later discover that macrocytosis has shown in blood tests since at least 2003. My folate was elevated. Other anomalies/issues – elevated vitamin D, a positive ANA. An MRI revealed cervical spondylosis and chronic sinusitis. Tests and nerve conduction test suggested no peripheral neuropathy. A sudden onset of severe gastric symptoms in August 2016 (I believe stress-related) resulted in a diagnosis of gastritis in December 2016. Potassium has been borderline low at 3.5. It's since oscillated between 3.7 – 4.1

    A cortisol saliva test revealed significantly elevated cortisol.

    An organic acids tests revealed my serotonin levels were barely detectable. I was low in B6 and vitamin C.


    Ruled out – a full thyroid panel (ex. RT3) came back clear. Ferritin was 85 at last check. Coeliac has come back clear twice (although my severe gastric symptoms have left me eating little). Helicobacter pylori ruled out twice. Various autoimmune diseases have been tested for and came back negative.


    April 2016 – present – In May 2016 I started to give myself daily B12 injections, alternating between methylcobalamin and hydroxocobalamin. I currently inject twice daily – one hydroxocobalamin, one cyanocobalamin. I found no apparent benefit from the methyl injection and struggled to source a potent form and one which was cost effective. I take these with a number of other co-factors-full list is below. I have had some marginal gains, whether that is a result of my B12 injections or correcting another possible nutritional deficiency I don't know for certain.

    Improvements: the dizzy spells have more or less cleared up. Joint pain which required painkillers summer 2016 is now a mild occasional niggle. Fatigue has improved about 20% but is still debilitating. Bladder urgency and frequency has improved about 25%. Tingling and weakness in left arm has improved about 50% (very occasionally it still comes back). I feel as if my overall position has not changed as the weakness, unsteadiness, lightheadedness, low blood pressure are still severe enough to leave me housebound, although writing things down I can more clearly see the small improvements.

    I am waiting referrals to see a neurologist at Kings hospital in London to investigate my autonomic nervous system and an ENT specialist for chronic sinusitis.


    Supplements – I currently take a batch of supplements. Many to try to heal my stomach which is in a bad way with gastritis at least. Others are co-factors for B12 or to target nerve issues/joint pain.

    - 2x B12 injections (Hydroxo and cyano)

    • Folic acid (Approx 4.8mg daily. Until very recently I was using methyl folate but couldn't discern any difference/benefit)

    • Solgar's V-75 multivitamin

    • Magnesium (glycinate, citrate and magnesium spray and salts)

    • Omega 3 (950mg EPA DHA)

    • Flax seed oil

    • Vitamin D (10, 000 IU 2-3 times/week and 30-60 minutes in sunshine 2-3 times a week)

    • Vitamin K2 MK7

    • Potassium 200mg tablet 1-2 daily. Coconut water (500ml-1 litre a day), diet (limited due to stomach issues but including avocados, fruit)

    • Biotin

    • Zinc Carnosine

    • Vitamin C crystals (1125mg)

    • Solgar's Gentle Iron (3-5 times/week)

    • Lion's Mane mushroom

    • COQ10 (100mg 3-4 times/week)

    • L-glutamin

    • Digestive enzymes

    • Colostrum

    • 5HTP (currently on a break after taking for 5 months)

    • Lecithin (1-2 times/week)

    • Permavite (stomach lining supplement)

    • Selenium (just started)

    • Manganese (just started)

    • Kelp (just started)

    • NAG (just started)
    (I have supplemented with adenosyl but wasn't aware of any significant benefit so I'm currently not supplementing)


    If you've made it this far- thank you! My 28 years as a vegetarian, macrocytosis, low B12 level, elevated folate led me to believe initially that a longterm, severe B12 deficiency was responsible for my body's break down. However after a year of B12 injections and experimenting with co-factors, I am not really much further down the line of recovery. I have started to question whether or not there is something else responsible for my collapse. Has anybody taken years to recover from a B12 deficiency? I believe that I had been deficient for many years – I saw a doctor in 2003 for dysphagia (which I've never really recovered from) and a blood test at this time showed mild macrocytosis, although I didn't learn this until last year. I have heard that nerves can take months-years to heal but I've not seen/heard much clinical or anecdotal evidence of a B12 deficiency nerve damage taking this correct. Most I've spoken to experience a significant improvement within a few months. Although I believe I was deficient for many years, I started B12 shots within 3 months of many of the neurological symptoms showing (although I'm aware the nerve damage may have happened some time before my becoming symptomatic). Am I missing a piece of the B12 recovery puzzle? Is it possible that any nerve damage is permanent and that I must learn to accept my condition rather than continue to throw money at B12 and other expensive supplements? Have a missed any other glaringly obvious possible differential diagnosis (I'm hoping to have my RT3 checked and also Lyme disease)? My symptoms fall under the CFS/ME umbrella-although I've not reached the point of diagnosis.


    My doctor is sending me for a psychiatric assessment. I suspected that this would happen as they've struggled to find anything. I think I will be written off with stress and just given anti-depressants-which I'm certain is not the right path for me. I have no history of mental illness.


    I am very grateful for any stories, advice, suggestions. Like many in this nightmare position, I have lost nearly everything – the business I set up, my job, car, social life. I have no money left for private tests and am struggling to afford the many supplements I'm taking. I am just rotting away in my childhood bedroom.


    Thank you, Cate
     
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  2. Valentijn

    Valentijn Senior Member

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    I find this a bit odd ... both are inactive forms which have to be converted to active forms. Why not just use one or the other? Most would prefer the hydroxoB12, since it doesn't contain cyanide and might have some other health benefits. How high of a dose are you getting? And do you inject into the fat or muscle?

    Why, since you tested high? I'm no methylation expert, but the increased folate could potentially be draining your B12.

    This one can cause some unpleasant symptoms. I'd be interested to hear if you do better while you're off of it.

    I'm pretty sure you can say "no", both to prescriptions and to the referral itself.
     
    cyclamen and Booksellercate like this.
  3. pcmenten

    pcmenten

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    Cate,

    I'm so sorry to hear about how sick you've been. I hope you recover very soon.

    Tell us more about your GI history. IBS-d, IBS-c, nausea, frequency of voiding, and the like.

    Paul
     
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  4. AdamS

    AdamS Senior Member

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    Do you suffer from post exertional malaise (e.g significant symptom exacerbation following mental or physical exertion)? Your March 2016 episode does sound suspiciously like ME or POTS but it's hard to say really. You might want to see if you fit this criteria.

    Some things I looked into/was tested for before I realised I had ME/CFS were:

    - CSF Leaks
    - Hypopituitarism
    - POTS/dysautonomia
    - Chronic Lyme Disease
    - Myasthenia Gravis
    - Multiple Sclerosis
    - Diabetes
    - Sjögren syndrome

    I hope this helps in some way, sorry to hear about your stuggle, I really hope you don't have ME/CFS.
     
    Jessie 107 likes this.
  5. TenuousGrip

    TenuousGrip Senior Member

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  6. Booksellercate

    Booksellercate

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    Thank you for your reply.
    Perhaps you are right! There are two reasons behind my actions-first it's quite common for B12 deficient sufferers to alternate two different types-although perhaps less common to alternate these two types admittedly-as the body tends to respond differently to both. Somje actually report to fare better on cyano than hydroxo. The only real gains I've made have been since earlier this year when my bladder symptoms started to noticeably and significantly improve. Whether this is due to this combination of B12, or simply (and probably most likely) enough time had lapsed for the nerves to start to regenerate (assuming the bladder issues were a result of nerve issues) I'm not certain. Either way, I'm reluctant to stop to find out. In an ideal world I would inject methyl but this is just not available for self-injection in the UK.
    My dose is pretty aggressive - 1mg of hydroxo and 3mg of cyano. I inject into the muscle. I have tried subcut but I noticed a slight deterioration - this has happened three times so I think is more than a coincidence.

    Due to the high doses of B12 I administer, I match with high doses of folic acid (or folate). I understand that folate is essentially B12's petrol. If I stopped the folate, I think my levels would drain very quickly at my high B12 doses. I believe my folate levels were high due to low B12 ("folate trap") which suggests to me they work very closely together. If there is insufficient of one or the other, the other simply cannot function. the B12 needs the folate to function and do its work so not sure what you mean by the folate draining the B12

    The 5HTP I added in as my serotonin levels were extremely low. I have felt a little better overall, moodwise, since taking it. I am on a break as it is not recommended to take for extended periods without one. I have never noticed any unpleasant side effects from taking it. I am monitoring my moods and more whilst off it though.

    The prescription I would decline. The referral, well I would actually quite liked anxiety to be ruled out. I think it's going to keep cropping up. I'm viewing it as an avenue to explore-and to rule out.

    Thanks for taking the time to comment and question. I haven't chased a private methyl supplier in the UK for a little while so I'll see if this situation has changed
     
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  7. Booksellercate

    Booksellercate

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    Kent, England
    Hi Paul, thanks for your comment!

    I don't believe I have IBS - my bowels actually work fine and like clockwork (small mercies!). The issue does seem to be limited to my stomach. I was diagnosed with gastritis (no cause given) - I have been given PPIs which I was unresponsive to. I have also altered my diet which is currently bland, anti-inflammatory and no low PH foods. The discomfort is nearly constant. Nausea and pain increase after eating - although doesn't often let up- so there does seem to be a connection to eating. My stomach has what I can best describe as a raw and irritated feel much of the time.
     
  8. Booksellercate

    Booksellercate

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    Thanks for the link-I do fit the criteria. But again, it is difficult to know as there are a number of illness which have a range of symptoms which fall under the same umbrella. I had been ill with a bad cold prior to the onset of my gastric symptoms and then my sudden collapse. Am I right in thinking ME can be triggered by a viral infection such as a cold?

    My MRIs suggest that I don't have MS. Diabetes and Sjögren syndrome have also been tested. However POTs and Lyme are two other illness which I'm looking into. I'll look at the others you've mentioned too. My symptoms + macrocytosis + low B12 level seemed like a pretty straightforward severe B12 deficiency. It is only after a year of injections and minimal improvement that I'm starting to have to dig deeper. A key symptom was my bladder-which has improved-which I find interesting. I know that nerves can take months, possible years, to regenerate. It is of course possible that I am(was) B12 deficient but also have other illnesses.
     
    AdamS likes this.
  9. Booksellercate

    Booksellercate

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    I know-what a story to tell one day, huh? My IgG was tested (with IgA) and came back negative (it was less than 0.1).
    I've not had IgM tested.I wondered how ME was 'tested' as far as it could be...
     
  10. Booksellercate

    Booksellercate

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    Kent, England

    I forgot to say that I've not noticed any specific exertional malaise-but my symptoms have made it difficult to exert myself at all. I struggle to walk for example due to leg weakness and low blood pressure and faintness.
     
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    ladycatlover and Booksellercate like this.
  12. pcmenten

    pcmenten

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    Hi Cate,

    I'll tell you what's been going on with me, you might find it interesting. I'm still in the middle of sorting what my health issues are, but I think I'm making progress.

    I have high titers for EBV, I have HHV6, a recent primary infection with HSV1/HHV1, and I've tested positive for Lyme disease. I have a history of issues with memory, focus and low mood. Lately, it has evolved to malaise and fatigue.

    I took Doxycycline for the Lyme disease and found that my gut processes improved a bit, but the rest of my symptoms have relapsed after discontinuing the antibiotics. But the gut improvements remained. I have a suspicion that my pancreas was sick and the Doxycycline has improved that situation.

    Very recently, I have started taking OTC remedies to treat what might be a chronic Candida albicans infection. It's still too soon to know anything for sure except that my gut processes are now nearly normal and the post-prandial malaise is vastly diminished or even gone.

    Since it is so easy to do and there is such low risk, you might consider some sort of remedy for Candida with a probiotic yeast called Saccharomyces boulardii.

    Have you been tested for the usual suspects; EBV, HHV6a, Lyme, and enterovirus?

    I suspect that if I can improve my gut issues, fixing the gut issues will improve my ability to prevent relapsing EBV and Lyme. (That's my story and I'm going with it. :) )

    Regarding the psych eval - be skeptical. You are definitely sick. One potential up-side? Prozac has antiviral properties!

    Paul
     
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  13. Booksellercate

    Booksellercate

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    I wouldn't mention ME, unless they did. The article has a very unpleasant tone to it.
     
  14. AdamS

    AdamS Senior Member

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    Yes you're quite right, there are a lot of vague symptoms making it hard to tell exactly what the correct diagnosis is. It sounds like you're making good progress in finding an answer though and have already had some good investigations done. If you do meet the criteria in the link then i'd say there's quite a high chance you do have ME as this is the strictest criteria I know of, that is only my opinion though, i'm not a doctor.

    ME has been linked to viruses e.g EBV and Enteroviruses etc in the past, nobody is really certain of the cause though, one hypothesis is that a number of different stressors (viral, bacterial, chemical, toxic, surgery etc) can lead to the same endpoint of ME/CFS.

    I notice that you take a lot of supplements. There's little evidence to suggest that they cure ME so i'd save your money for the ones that you get the most benefit from.
     
  15. Mary

    Mary Senior Member

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    There is debate as to whether injections of B12 or sublingual is more effective, and many believe that sublingual is just as effective. Your doses of B12 are not that high. I take two 5000 mcg. doses of liquid methylcobalamin a day (which I take sublingually), and it was only after doing this that I started to notice a difference, an increase in energy. I did do B12 shots for several years, although only 3 x a week, which in hindsight was not enough. I guess I am suggesting you might try a sublingual or liquid methylcobalamin - I'm sure of the 5000 mcg doses, I'm getting a small percentage, but this is what it has taken for it to help me. Other people have been helped by transdermal methylcobalamin.

    Re your folate - that's a very high dose. I don't think any of us need folic acid - it's synthetic and can actually interfere with folate absorption and utilization. So I would go back to methylfolate or metafolin. You've had some pretty serious problems with your B12 and I think it would be best to use a good form of folate.

    With my high dose B12, I take 1600 mcg. of folate - and I do well with this. And since you tested high for folate, it might be wise to experiment with your cutting your dose - and again, I would stop the folic acid.
     
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  16. Booksellercate

    Booksellercate

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    Good news that you are making progress-and that your stomach is unlocking the door so to speak. I think the stomach is often implicated.
    I haven't been tested for any of the usual suspects-EBV is on my list, as is Lyme-which must be tested privately in the UK (I don't know where you're based). Like many others, being unable to work has left me in a bad financial state with little money for private testing. I'm trying to get some money together as Lyme is something I'm very keen to test for. My inflammatory markers and white blood cell count have never been up. I suggested something viral/bacterial to the last neurologist I saw. He was dismissive, said it was a possibility but there were no tests to prove or disprove. Are there any non-specific tests which might suggest a virus or bacteria? I have been taking samento liquid for a few days.

    I have considered Candida-although the organic acids test didn't show high levels of the various yeast and bacterias-with the exception of arabinose. I'm not sure if this is enough to 'rule out' candida. I have tried probiotics-but I'm not familair with this particular strain of bacteria. As you say, it is an easy and relatively cheap experiment to try.

    I am going into the assessment with a healthy dose of scepticism - I am positive there is a physical cause of some description.
     
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  17. Booksellercate

    Booksellercate

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    I do not know how you would arrive at that conclusion. I think some other things need ruling out/testing eg for EBV which you mention. I am very tired and often have brain fog but I have always associated ME with being bedridden-which to be honest I am not quite. However I am realising that this is an illness I know very little of.

    To be honest I am not sure which ones benefit me. My body does not seem to be very responsive - to either medication or to supplements, directly at least. Which also means I don't know that they're not working either. Perhaps they are working behind the scenes-would I know? Then of course it becomes hard to stop. I am aware of this pattern though. I have had severe gastric disturbances for nearly a year and I know that along with my dropping weight I am malnourished, which is also a reason for some of the supplements.
     
  18. Booksellercate

    Booksellercate

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    I have always felt more comfortable with injections due to my stomach issues. I felt that my B12 number was low-as just before it was tested, I'd been taking a high dose of oral B12 in the form of an 'energy' multivitamin. It made me question my B12 absorption. Liquid methylcobalamin is not something I've encountered so I'll certainly look into this, especially as you had a marked improvement. Transdermal methylcobalamin is always worth investigating at this point I think.

    The high dose was recommended by a particular B12 protocol which has helped a number of people with B12 deficiency. It's one strategy amongst many I know and was worth a try - I guess different people respond to different things. I am considering introducing a low dose of methylfolate again as I'm not sure how well I methylate.
     
  19. Mary

    Mary Senior Member

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    @Booksellercate - yes, many here have trouble with digestion and absorbing b12 when taken orally so I totally agree with you there. Sublingual tablets bypass the digestive tract - they're absorbed through the mouth. And the liquid I take, I leave it under my tongue as much as I can so again I'm absorbing it primarily through my mouth. And if you want to use methylcobalamin, sublingually can be effective, bypassing the digestive tract. It may be worth an experiment since your progress has been slow. I've been taking Bluebonnet liquid methylcobalamin 5000 mcg. per dose. it costs about $20 a bottle on Amazon and lasts me a month.

    For your info, on blood work my B12 levels are very high, well above the normal range; but on hair analysis it's almost undetectable. Again, many here have the same issue - we have to take very high doses of B12 to get enough that's actually useable.
     
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  20. AdamS

    AdamS Senior Member

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    Okay I see. In that case i'd suggest getting some autonomic testing done (probably by a cardiologist), a tilt table test would be a good start to test for POTS/dysautonomia, the symptoms you describe point towards that (I have POTS myself so I can relate to the leg weakness/low blood pressure and faintness).
     
    Last edited: Jun 23, 2017

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