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I don't think your mom's problem is due to a vitamin b12 deficiency for several reasons....[I]a healthy person stores several years worth of vitamin b12 in their body (and up until the bacterial infections, you say your mom was healthy!) [/I]so a v B12 is extremely rare (per Mayo Clinic). Also, although your mom's diet was not good, she did eat cereal and cheese, both of which are good sources of vitamin b 12 and most likely an adequate daily supply......a daily supply of vitamin b12 can be obtained in a glass of milk and a cup of raison bran, for instance.

Although a vitamin b12 deficiency could explain your mom's neurolgical symptoms and gait problems, it doesn't explain the bacterial infections, and the fact that her symptoms got rapidly worse several weeks after taking prednisone. And it doesn't explain (correct me if you know otherwise) the continued shaking and trembling that your mother continues to experience.

Multi infarc dementia, a stroke, and alzheimers' disease could account for many of the neurological symptoms...and urinary tract infections can cause depression which in turn can mimic dementia. Multi infarc and a stroke would explain a [I]rapid[/I] deteriation of cognition and mobility, bUT they can be detected [I]conclusively[/I] in testing (and the doctors didn't report seeing this on her tests) ...unlike alzheimers which develops slowly and as far as I know, cannot be diagnosed conclusively in testing.

The only thing I know of that can explain ALL of the symptoms your mother is experiencing are bacterial infections spread by an infected tick, probably lyme disease but there is some controversy in your area as to what kind of tick infections are prevelent, Lyme's or STARI... by the way, that healthy young football player from Florida State U was diagnosed with Lyme's disease so it is in your area.

On a final note, prednisone should NEVER be given to someone with lyme disease because it makes the condition worse...despite being treated for 4 uti's and a stomach infections with antibiotics, it wasn't until after taking prednisone that your mother developed "non stomach" issues and started taking meds for other symptoms.

Only a doctor who specializes in infectious diseases and who is Lyme Literate can diagnose her...but if it were my mother, I would certainly consider consulting with this kind of specialist. I have read that some people see as many as 30 different doctors, in a number of different specialties before getting an accurate diagnosis.

Because lyme infections are fairly common in the urinary system, they can do a Lyme dot assay (done through Igenex labs), which detects the Lyme organism (Borrelia burgdorferi) in the bladder. Keep in mind that there is no one conclusive test for lyme's and that a LLMD sometimes bases diagnosis on symptoms alone.

Good luck, Linda. I wish you and your mother the very best.


Hi Bethsheba

Firstly let me say you are very welcome here your info is very valuable in the mix and it is grand that you are passionate about making others aware of Lymes well done ......It gets hard when so many things can have the same symptoms......We dont have Lymes here that I am aware of but many present with the symptoms of it so I guess when can exclude it from our list in Australia LOL.........

And i would like to add that it is very kind to do some much work for Lindas mum that is appreciated I am sure...... well done once again........

There is if you dont mind some things I would like to add to your above post re B12 if thats ok?

B12 deficiency is very common it is often misdiagnosed for other things (the some thing as Lymes more common than realized because it goes undiagnosed)

The best source of B12 is sardines (yuk) and meats it is only ever found in animal products like milk It maybe in cereals but they would be fortified not natural..

B12 deficiency cause trembling,shaking, weakness I had them (I was actually a real mess both physically & mentally not to mention emotionally I even had personality changes was a very different person I am return back to my usual ME state)I went through truck load of doctors & every test known to man they even missed my deficiency because it was low normal...

B12 deficiency can cause infections as it affects the immune system some people will come down with everything and anything while they are deficient... not to mention slow wound healing
H-pylori and many other stomach bacterial infections can cause B12 problems(there are a great many reasons why someone can become deficient)The treatment used for the Hpylori only worsens the condition, antibiotics and PPI's.........
B12 deficiency can cause a rapid heart rate for sure as it plays havoc with folate rendering it useless therefore upping homocystiene levels in turn affecting the cardivascular system.....B12 problems wreck havoc on the vascular , nervous system, musculoskeletal, genitourinary, gastrointestinal, immunologic, and blood systems........

One can be low normal with B12 and then have somthing like prolonged H-pylori the start with treatment and it will take your levels down really quickly..... For example mine went from 320-130 in 9 months by then I was having severe memory loss,speech difficulties, severe panic attacks,short of breathe,tachycardia,pallpitations, couldnt find my words and would diagree and really become many more things but they were really hard for my family...

There are all sort s of mdication that interfere with absorption of B12 for example metformin for diabetes and There are also other medicines used zantac for heartburn.....
There are other medications that will mask the deficiency like folate for large blood cells ,diamox for tremors they may treat the symptoms but the deficiency lingers cause more damage and eventually the medication doesnt work any more......

Any one who has an autoimmune disease is more likely to have PA

I think the time line you put together for Linda was amazing thankyou for taking the time to pass on your useful info I will be doing some searching on Lyme...

I hope you have found the info I have posted useful I just thought you might like to know some of this........I have lived with the deficiency for many years howver I dont class myself deficient theses days.......And I look forward to my shots every week

Cheers Bethsheba

keep up your postings

Rainbows End
hi everyone
theses 2 b12 threads have been very helpful, a lot of good info shared here.

ive been ill for about 8 years now, the past year ive been going to the doctor to try and find out why ive felt so ill for so long... my symptoms are...

- Always really tired, i wake up after 10 hours sleep and still feel tired, weak and canít walk up a flight of stairs without being out of breath, no energy or motivation to do anything, constant exhaustion.
- Sensitive to heat- if its a bit cold i feel really cold and my hands and feet go numb and purple, and if itís a bit hot i feel really hot and sweat lots.
- Digestive problems.. really noisy stomach growling all the time, inconsistent stools, bad bloating, horrible stomach pain, craving food and feeling hungry all the time (especially sugar and carbs), donít put on weight no matter how much i eat, get really faint and shakey if i donít eat for a couple of hours or sometimes just at random times, this is only relived by eating.
- Heavy and painful periods (eased a bit with the pill), breakouts of spots on face and scalp, excess hair, greasy skin
- chest pain/tightness
- Feeling thirsty all the time (despite drinking lots of water) and having a dry, mouth/dry sore lips but still needing to pass water quite a lot
- Rashes on upper arms
- poor posture/uncomfortable back
- severe sweating, muscle twitches/pulsations
- alcohol affects me alot... legs go funny after only a few sips of beer or wine
- Brain fog, feeling Ďout of ití, not being able to concentrate, forgetting things, vision going funny - a bit dark/patchy light/blurry - colours go darker
- heavy eyes, feel like theyíre trying to cry sometimes
- off balance/clumsyness - clip door frames a lot - busy places and flourecent lights make me dizzy and spaced
- Chronic post nasal drip (a cause has never been found), pressure in the head, tingling, , stiff neck, uncomfortable back, stiffness in lower back
- Lump in front of my right ear/top of jaw which is sometimes sore and glands under chin/top of neck get tender and sore, also had lumps in nose
- Severe anxiety and depression caused by having all of these problems, get nervous about stupid things/panic attacks , no confidence or self worth, social anxiety, difficulty talking to people, easily embarrassed for no reason/blushing Ė like i cant control myself.

now, my doctors tested me for all the basic things and they were all normal.
so shes diagnosed me with IBS and thinks that all my symtpoms are casued by anxiety, im sorry but this is rubbish. my anxiett didnt start unitll a couple of years after i started getting exhausted and the stomach problems began. theres no way anxiety can casue all of these problems.

she also thinks i may have ME, im wating to see a specialist.
i dont think this is right, im almost certain my problems are casued by b12. i had to make the nurse take a blood smaple for b12, becaseu the doctor said there was no need... my result...272.
now my doctor says this is fine, no treatment needed, its normal becasue the range is 140-900. but from what ive been reading here 272 is not normal and not a healthy level.

do people think that low b12 could be casuing me to feel this exhuasted and ill? i think i may have hidden b12 deficiency.. and want to get other peoples opinions before trying to force my doc to do more test...
Hi helpwanted! You've certainly come to the Right place!Welcome!

Okay...Yes you're B12 level is too low!!!! Next:An MMA(methylmalonic acid test)would be Highly Advisable and a Homocysteine either od these two test levels are elevated then you have an occult(hidden)B12 deficiency.Did you get your folic acid tested also?If not you need that test too.

Stomach issues are very apt to go along with B12 problems...and IBS fits right in there!All the other blood labs(like hemoglobin,hematocrit)can be fine and you still are low on B12.

What is ME?Did you mean MS?

Also do you have a glossy tongue(glossitus)or have trouble swallowing sometimes?

Any pins'n needles feelings in your fingers/toes along with the coldness?

Your symptoms are very consistent with a low B12 level.Also are you around the age for peri-menopause(this can start 10 years before menopause).....and some of your symptoms seem to suggest that.

When your B12 is in the lower range(like yours is)a hematologist would run those tests I mentioned,because it has been knowm that patients under 400(the lab my dr. uses says 200-1100 is the normal range)will have s ome symptoms and patients with a level under 300 will have many symptoms and need to be tested with the MMA,folic acid and homocysteine tests to look for a hidden B12 deficiency.Most MDs won't do it unless you request it,but a blood dr.(hematologist)will always do those tests.

Do not feel like your asking too much from your dr.Your dr. is getting paid to do tests and help you get well!Please get those other tests!!!If they come out fine then I would just go to the health food store(GNC,etc.)and get B12 sub~lingual(methylcobalamin) and start taking that.Don't start it 'til after you get those other tests..or it might mess up the test results.

Please take many of us have been exactly where you are right now,but just remember it's your health and quality of life that's being compromised so don't be afraid to Tell the dr. you want and need those tests.I was at 279 when my dr. found my MMA test was 415(normal range was 90-278),but my homocysteine and folic acid(red folate) were fine.So my B12 level was 279 and yours is 272...pretty close,huh?

I wish you the best and hope you get those tests done!The longer it goes undiagnosed the more symptoms you'll get and worsening of your current don't wait...take care...and please post back!

bethsheba, yeh thanks for that i will keep lymes in mind...
i think theres something more going on too... but the trouble is my doctor thinks nothings going on becssue my labs were normal... she thinks its all down to IBS, anxiety and maybe chronic fatigue syndrome.
now i no from what my stomach does to me that this is much more than IBS...
and none of those conditions acoount for some of my symptoms... im just being ingored by the doctors and its being made out like its all in my head..
thats why i have to explore every avenue that sounds plausable myself...

im pretty covinced that candida is causing my stomach problems, and if i do have hidden b12 defic, then maybe thats contributing to them too... but ive had a candida test done privetly and the results came back with very high levels of candida in my body and my stool ph was too low therefor my body is too acidic... but again the doctors here wont treat candida becasue theres not enough evidence for it.. even my own doctor said, yeh it mite be candida causing some of your problems but i can treat you so go and get tested privatly.

and i just really feel like theres something else going on aswell... i know candida can give you a foggy head etc but with the state of my head and nervous system i think theres somthing more. the reason i suspect b12 is becasue a lot of people have told me thats what it sounds like before, when ive posted asking for adive plus i fit most of the symptoms and my own b12 level is low... so i htink its more than fair to suspect it.

i just dont know what else it could be...
ive eliminated -
ceoliac, lactose intolerance, allergies to mites/animal fur etc, thyroid (basic tests), full blood counts fine, ferretin is fine, h=pylori - negetive, liver functon - fine, glucose - fine, urine sample was clear, had an ultrasound of stomach/liver/pancreas etc and nothing was found, also had some blood tests for inflamation or something like that and that was normal..

as you can see im trying to eliminate everything to try and get to the bottom of this... the only abnormal things have been the b12 and candida.

does anyone have any more suggestions other than lymes of what my problems mite be?

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