- Messages
- 83
- Location
- Kent, England
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)
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
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)
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