Aa
Do I have CFS?
Hey,
I have had various symptoms since September 2012 which started with headaches, the list is as follows:
Headaches
Lightheaded/dizzy
Eye pain
Increased Saliva
Increased Sweating including night sweats which seems an intolerance to heat.
Increased sense of smell
Saying wrong words
Forgetfullness
Pins and Needles at night in my hands
Unstable Blood Pressure which can shoot up to 160/115 and back to 140/90 (ACE Inhibitor failed to control)
Fatigue/Tired all the time, muscles seem to fatigue much faster then ever before.
Sleep Disturbances
Infact fatigue has become a major issue for me the past few months, Ibefore Feb 2014 I was cycling everywhere including up hills with ease, I was placed on ace inhibitor and beta blockers for my crazy BP and started experiencing fatigue like nothing I had ever felt before, I couldnt even walk to my local shop which is 5 mins away. I was unable to cycle up hill.
I quit the ace inhibitor and beta blocker because I thought that the fatigue was related to taking those but the fatigue has not gone, I yawn all day, feel tired upon waking up, have fallen asleep multiple times at around midday. If I try to do any garden work like digging I will tire out in a few mins and feel lethargic.
Funny thing with all of that is my sleep is not good either, I find it hard to stay asleep and any noise, pins and needles in hand, or getting hot/sweaty wakes me straight up or even getting to sleep in the first place is hard.
I have been tested for numerous things and most my blood work is clear, Thyroid, Diabetes, Anemia, all negative, I had fears I have a brain tumor but its been nearly 2 years since this started so I dont think thats likely either. The only thing that has been found is my docs tested for B12 Defiency and I actually came out as high B12 - something like 50% over the lab cut off range, the lab cut off was 660 my B12 was 990, I have tested this 3 x in blood tests and all 3 x it was a similar level. I do not take vitamins.
Because of this I was tested for blood cancers by Haematology but that was also negative, Liver was also fine. The B12 remains a "mystery"
I'm wondering if its linked to CFS and functional B12 defiency, meaning my body is unable to use the B12?
cheers for any help.
I have had various symptoms since September 2012 which started with headaches, the list is as follows:
Headaches
Lightheaded/dizzy
Eye pain
Increased Saliva
Increased Sweating including night sweats which seems an intolerance to heat.
Increased sense of smell
Saying wrong words
Forgetfullness
Pins and Needles at night in my hands
Unstable Blood Pressure which can shoot up to 160/115 and back to 140/90 (ACE Inhibitor failed to control)
Fatigue/Tired all the time, muscles seem to fatigue much faster then ever before.
Sleep Disturbances
Infact fatigue has become a major issue for me the past few months, Ibefore Feb 2014 I was cycling everywhere including up hills with ease, I was placed on ace inhibitor and beta blockers for my crazy BP and started experiencing fatigue like nothing I had ever felt before, I couldnt even walk to my local shop which is 5 mins away. I was unable to cycle up hill.
I quit the ace inhibitor and beta blocker because I thought that the fatigue was related to taking those but the fatigue has not gone, I yawn all day, feel tired upon waking up, have fallen asleep multiple times at around midday. If I try to do any garden work like digging I will tire out in a few mins and feel lethargic.
Funny thing with all of that is my sleep is not good either, I find it hard to stay asleep and any noise, pins and needles in hand, or getting hot/sweaty wakes me straight up or even getting to sleep in the first place is hard.
I have been tested for numerous things and most my blood work is clear, Thyroid, Diabetes, Anemia, all negative, I had fears I have a brain tumor but its been nearly 2 years since this started so I dont think thats likely either. The only thing that has been found is my docs tested for B12 Defiency and I actually came out as high B12 - something like 50% over the lab cut off range, the lab cut off was 660 my B12 was 990, I have tested this 3 x in blood tests and all 3 x it was a similar level. I do not take vitamins.
Because of this I was tested for blood cancers by Haematology but that was also negative, Liver was also fine. The B12 remains a "mystery"
I'm wondering if its linked to CFS and functional B12 defiency, meaning my body is unable to use the B12?
cheers for any help.
Best Answer
ask for a heavy metal toxicity test to see if you have something like mercury or lead or barium in your system ...we are being bombarded with aerial spraying they are doing , look up , do some research ..Its could be you are sensitive to what they are spraying
Been having further issues the past 2 weeks,
I seemed to catch some kind of virus, I had post nasal drip, too much saliva and what seemed like blocked ears, before I then got facial pain. I then got what seemed to be a dry mouth or feels like a dry mouth, with pain in my gums, teeth, jaw and the right side of mouth feels like it dont move properly when talking, talking has become difficult, unsure if its the dry mouth or what doing that.
My Dr ordered blood testing for mumps, although I have had that before as a kid im sure. both Immunoglobins and B12 were again added to the blood work. I have some of the results already, b12 is at an all time high for me of 1150 with the scale being something around 200-600. Serum Immunoglobin A is still also raised at 4.1, it was also raised last year at 4.25 but I was negative for blood cancers including multiple myeloma. SO it appears my immune system is working over time against something? possibly itself?
The Drs I have seen are still shrugging their shoulders.
I seemed to catch some kind of virus, I had post nasal drip, too much saliva and what seemed like blocked ears, before I then got facial pain. I then got what seemed to be a dry mouth or feels like a dry mouth, with pain in my gums, teeth, jaw and the right side of mouth feels like it dont move properly when talking, talking has become difficult, unsure if its the dry mouth or what doing that.
My Dr ordered blood testing for mumps, although I have had that before as a kid im sure. both Immunoglobins and B12 were again added to the blood work. I have some of the results already, b12 is at an all time high for me of 1150 with the scale being something around 200-600. Serum Immunoglobin A is still also raised at 4.1, it was also raised last year at 4.25 but I was negative for blood cancers including multiple myeloma. SO it appears my immune system is working over time against something? possibly itself?
The Drs I have seen are still shrugging their shoulders.
Thanks Niko
That is indeed the sad thing that I will not make any improvments under the care of my current doctors, indeed they are the type of doctors that would rather blame anxiety for all symptoms.
I will start a trial on methyfolate and b12 as soon as the b12 arrives (orded from amazon)
That is indeed the sad thing that I will not make any improvments under the care of my current doctors, indeed they are the type of doctors that would rather blame anxiety for all symptoms.
I will start a trial on methyfolate and b12 as soon as the b12 arrives (orded from amazon)
Ah I should have mentioned, it is not just an improvment in fatigue levels since stopping the Mega B-Complex but also my BP levels have dropped to 130-140/80-90.
Thanks for the reply Niko!
My folate is/was middle of range with only B12 high.
I never ever took any B vitamins before the high tests results but I did start taking a Mega B Complex the past few months but I have an idea that it has actually made me more fatigued, well certainly didnt help my fatigue levels. Inspected the bottle closer and its all the inatcive forms, Folic Acid, cyanocobalamin.
I stopped this supplement around 4 days ago, and have actually felt less fatigued as compared to the previous two weeks.
I have instead ordered Jarrow, Methylcobalamin 1,000mg lozengers and Solgar Metafolin.
Generally Doctors don''t listen to me, or don't believe me when I tell them symptoms. I have had a few problems over the past 10-12 years which could in theory be linked with this.
2002 - started getting ghosted vision/double vision with each eye, at the time I was told there was nothing wrong, it stayed stable strange vision until 2012 when my left eye got dramatically worst, again it took me months of going up and down to different Drs and Specialists but I was finally diagnosed with having Keratoconus, an autoimmune eye disease that effects the corneas making them go thin and lose shape. Also has something to do with an enzyme fault.
2005: started noticing I was losing far more hair then normal, although it was not in typical male pattern baldness areas it was generalized thinning all over, I was looked at by dermatology and dismissed. the thinning has basically carried on and still have that going on today, my hair is pretty thin and brittle all over, my sideburns even have hair loss and the back of my hair. - again I think this maybe linked to an autoimmune response.
I also have server allergies, well I sneeze, clear my throat, itch the roof of my mouth just about every single day of my life for the past two years, I have even had to take double doses of anti-histmines to get it to calm down some days.
My folate is/was middle of range with only B12 high.
I never ever took any B vitamins before the high tests results but I did start taking a Mega B Complex the past few months but I have an idea that it has actually made me more fatigued, well certainly didnt help my fatigue levels. Inspected the bottle closer and its all the inatcive forms, Folic Acid, cyanocobalamin.
I stopped this supplement around 4 days ago, and have actually felt less fatigued as compared to the previous two weeks.
I have instead ordered Jarrow, Methylcobalamin 1,000mg lozengers and Solgar Metafolin.
Generally Doctors don''t listen to me, or don't believe me when I tell them symptoms. I have had a few problems over the past 10-12 years which could in theory be linked with this.
2002 - started getting ghosted vision/double vision with each eye, at the time I was told there was nothing wrong, it stayed stable strange vision until 2012 when my left eye got dramatically worst, again it took me months of going up and down to different Drs and Specialists but I was finally diagnosed with having Keratoconus, an autoimmune eye disease that effects the corneas making them go thin and lose shape. Also has something to do with an enzyme fault.
2005: started noticing I was losing far more hair then normal, although it was not in typical male pattern baldness areas it was generalized thinning all over, I was looked at by dermatology and dismissed. the thinning has basically carried on and still have that going on today, my hair is pretty thin and brittle all over, my sideburns even have hair loss and the back of my hair. - again I think this maybe linked to an autoimmune response.
I also have server allergies, well I sneeze, clear my throat, itch the roof of my mouth just about every single day of my life for the past two years, I have even had to take double doses of anti-histmines to get it to calm down some days.
Correction:
The body in this case has difficulty in converting " Inactive" forms of B12 and folate into active forms.
I wrote "active" instead.
Now it makes more sense, lol!
The body in this case has difficulty in converting " Inactive" forms of B12 and folate into active forms.
I wrote "active" instead.
Now it makes more sense, lol!
Hi Vigil.
It sounds that you may have a MTHFR gene polymorphism.
(The MTHFR gene produces the MTHFR enzyme, which is critical for many
essential functions in the body)
The body in this case has difficulty in converting active forms of B12 and folate into active forms.
The inactive folate and B12 build-up in the serum, causing even greater inhibition of the active forms.
In a broader sense, MTHFR gene polymorphisms (mutations/defects)
can cause high Homocysteine levels (which would explain your persistent high BP) and increase your risk for coronary heart disease,
decreased conversion to glutathione (the master antioxidant), less methionine which leads to increased risk for arteriosclerosis, IBS, stroke, dementia, low levels of neurotransmitters,cancer,less SAMe (SAMe regulates over 200 enzymes in the body) which can also cause depression and on and on it goes!!!
Another possibility is, if there's no MTHFR gene polymorphism, is poor B2 conversion to its active form due to low thyroxine ( the T4 thyroid hormone) which in turn affects the effectiveness of the MTHFR enzyme dramatically!
So it's just the same as having the MTHFR gene polymorphism.
So if this is indeed the case, do not let your doctor downplay the role of
MTHFR, or if you suspect s/he's not familiar with it, then look for another more open and more knowledgeable doctor and get tested, even if not covered by NHS!
For now, you can do a methylcobalamin B12 (the active form) supplement trial, starting with a low dose and the same for methylfolate (the active form of folate/folic acid).
Avoid any foods or supplements which contain non-methyl B vitamins.
Please note, that my comments are not intended to replace medical advice.
If you have any questions , just post again, or if you prefer pm me directly.
Cheers.
Niko
It sounds that you may have a MTHFR gene polymorphism.
(The MTHFR gene produces the MTHFR enzyme, which is critical for many
essential functions in the body)
The body in this case has difficulty in converting active forms of B12 and folate into active forms.
The inactive folate and B12 build-up in the serum, causing even greater inhibition of the active forms.
In a broader sense, MTHFR gene polymorphisms (mutations/defects)
can cause high Homocysteine levels (which would explain your persistent high BP) and increase your risk for coronary heart disease,
decreased conversion to glutathione (the master antioxidant), less methionine which leads to increased risk for arteriosclerosis, IBS, stroke, dementia, low levels of neurotransmitters,cancer,less SAMe (SAMe regulates over 200 enzymes in the body) which can also cause depression and on and on it goes!!!
Another possibility is, if there's no MTHFR gene polymorphism, is poor B2 conversion to its active form due to low thyroxine ( the T4 thyroid hormone) which in turn affects the effectiveness of the MTHFR enzyme dramatically!
So it's just the same as having the MTHFR gene polymorphism.
So if this is indeed the case, do not let your doctor downplay the role of
MTHFR, or if you suspect s/he's not familiar with it, then look for another more open and more knowledgeable doctor and get tested, even if not covered by NHS!
For now, you can do a methylcobalamin B12 (the active form) supplement trial, starting with a low dose and the same for methylfolate (the active form of folate/folic acid).
Avoid any foods or supplements which contain non-methyl B vitamins.
Please note, that my comments are not intended to replace medical advice.
If you have any questions , just post again, or if you prefer pm me directly.
Cheers.
Niko
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I'm NOT surprised to read about your allergies and other issues.
Anti-histamines are just a temporary "surface" remedy.
You need to find a knowledgeable Natural Medicine Doctor or ND, outside NHS, to get your health back to normal.
I can give you all the explanations and the medical science you want, but obviously at present you can't make any improvements under the care of your existing doctors.
Take good care.
Niko