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Linda,

There were several red flags in your post…but the condition I suspected may have been rare in your area so I needed to find out just how rare …one of the first pieces of information I found was a news story about a man, found on the streets of St Petersburg in June of 2005. This man was engaged in unusual behavior, wearing only wet shorts, and proclaiming he was God. He became agitated/violent/beligerent, had to be pepper sprayed, and subdued. He was not under the influence of alcohol. The man was “Bakered” for observation. Recreational/experimental drug use was ruled out. Prior to this event, this man was young, a University of Florida student with straight A’s, and an excellent athlete…I’m sure if he had been an older man, he would have been diagnosed with Alzheimer’s and institutionalized but (because of his age?), the doctors’ looked further and were able to diagnose and treat him for a different condition.

This “case study” suggested that yes, although the condition I suspected was rare, it was recognized in your mom’s area.

[COLOR="Red"]Red Flag Number 1.[/COLOR] Based on my own experience, I always suggest that when there is a change in health that one look for side effects of medication (as some of you so wisely suggested) because doctors fail to do this. I considered that here…but couldn’t get past the fact that your mom went from a healthy women to someone with multiple bacterial infections within months (the uti’s and the stomach infections).

This was of interest because I recently read of a woman who had recurring bladder infections, only to learn that a previously undiagnosed “condtion” was causing those infections. She was told by one doctor that of the patients the doctor treated, 1/3 with recurring bladder issues also had this condition. Now uti’s aren’t the same thing as bladder infections but they are very closely related.

[COLOR="red"]Red Flag Number 2.[/COLOR] I was on predisone for a sore throat a number of years ago and experienced very serious side effects from it. Also, I knew a woman who had to be hospitalized for depression, a side effect of the prednisone...in both cases, the prednisone was a small dose and only taken for 10 days! For those reasons, I pay attention whenever I see literature discussing the dosage/long and short term side effects of presnisone…When I saw the prednisone on the list of meds, I took note! And I looked in the months after she took this med…couldn’t see red flags anymore…there were red banners waving.

The decline in her mom’s occurred RAPIDLY in the months after taking the prednisone.
Prednisone is a steroidal therapy and is often prescribed to reduce inflammation, but in your mom’s case it was (I think) prescribed to destroy the stomach flora, or the bacteria in the stomach. Problem is prednisone can also weaken your immune system, worsen infections or reactivate infections that a patient recently recovered from. But what is significant here, is that patients with a certain “condition” should not be given prednisone because it can seriously impair the immune system, causing it to enourage the “condition” to grow, instead of curing it! I suspect that is what has happened in your mother’s case.

[COLOR="Red"]Red Flag Number 3[/COLOR]. Sticking my neck out here because don’t know when the atenolol was prescribed, but it was prescribed for a high heart rate and the “condition” I have in mind can cause a very high heart rate.

Linda, your mother has presented/is presenting with the following symptoms: urinary tract infections, stomach infections, anxiety attacks, depression, lethargy, speech problems, mood disturbances (anger, acting out), cognitive problems, memory loss, fearful (paranoia), hallucinations, hypersensitivity (suggested by the soft speech), gait problems (suggest bone, joint, and neurological), shaking/trembling (sensitivity to heat/cold and/or neurological), heart problems (thus the atenolol). In other words, the condition she has impacts her urinary system, digestive system, muscle/skeletal system, neurological system and cardiac system. In other words, her condition affects multiple body systems.

Although diagnosed with AD, meds aren’t helping….
Just as a note, although your mom’s diet is/was not good, cereal and cheese are very good sources of vitamin b12…that’s not to say she isn’t deficient, and that a deficiency wouldn’t contribute to her problem, but as far as I know, vb12 doesn’t cause multiple body infections. It is not uncommon for people with b 12 and anemia to have problems with their blood pressure…but the problems are with LOW blood pressure and your mom’s doctors (hopefully) wouldn’t have prescribed a very heavy duty anti-hyperintensive (atenolol) if she was predisposed to those conditions.

Are there any questions/comments/clarifications thus far?

Bethsheba
[QUOTE=bethsheba;3764275]Linda,

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.

Bethsheba[/QUOTE]

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 arguementitive.....plus 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 test....is 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 care....so 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 deficiency...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 symptoms...so don't wait...take care...and please post back!

Scout~
bethsheba...

why do you doubt i have b12 problems... when i have all the symptoms and m b12 level is too low!
b12 doesnt have to be a symptom of something else does it? enough people on here have felt a lot better after treating the b12 and like i said all my other results were fine.
i doubt very much its lyme disease and its very likely the candida came from all the anti bitoics i took as a child
Hello help wanted!

The tongue might feel sore after eatting spicy foods or look redder than usual,but some people will have a very pale tongue,gums and lips...it's different for each person.

I would say it's safe to say you are not in peri-menopause...you're a bit too young for that....I was just wondering that's why I asked you.

Your dr. was talking about you not having large red blood cells...the MCV on the labs..mine were fine too(in the middle of the normal range)so that is a mistake for your dr. to just go on that...it seems most drs. say the same thing....after all hematology is not their specialty.

Low B12 is often mis-diagnosed as a "psychiatric" condition...you are not alone many of us have gone through the same thing as you.Is there any chance you can see a hematologist?You need those other tests,but if you can't get them then I would really just go buy the B12(liquid form...it's called sub~lingual B12)and see if you start feeling better..I'm sure you will!

It's a real shame that drs. just dismiss low B12,but you have to take things into your own hands if you can't get the help from your dr.Maybe you could tell your dr. that you have a close relative that has a hidden (occult)B12 deficiency and that they said they had the same symptoms as you and their B12 level was almost the same as yours is now....that might help.Just say they had a high MMA level...sometimes you have to use "psychology"on the drs.(hahaha),but we all do what we need to do when it comes to our health!

I feel so badly for you...I know because I went through the same things you are facing now.So don't give up...you have to be strong and persist 'til you geta dr. to listen to you.

Post anytime...we are all here to help each other.I'm very concerned about you and I do hope you get in to see a hematologist soon or at least get your current dr. to order those other tests.

Please take care

Scout~
hi help wanted....your B12 is too low...I have been to several neurologists(including two from Rush University,Chicago Illinois) and they told me a healthy B12 level should be over 400.Yes there's a possibility you could lave Lyme Disease,but you could also have one or more of a zillion other health problems.

Just don't get overwhelmed with thinking that you might have this or that.Your B12 is at the low end which is medically proven to cause neurological symptoms.My dr. said I was fine,but I wasn't so I went on my own to a hematologist and she said I wasn't fine.The B12 shots gave me back my health.I had all the tests to see what was causing the lower B12 and everything came out fine.The dr. then said it was most likely my diet.I have allergic bronchialasthma so I don't get a lot of dairy in my diet.My asthma symptoms went away after my B12 level went up.B12 is a Vital part of the central nervous system and when your level is low you start using the B12 that is stored in your liver.Alcohol,smoking,diet,IBS,fluctuations in hormones..these all can deplete your B12.

Lyme is a very cruel disease,but so is cancer and a whole lot of other diseases.It's very difficult as we've heard to get a Lyme diagnosis,but you have to have been bitten by a tick and that's a fact.

Just take it one step at a time....and starting with getting your B12 level up is a good place to start.

Take care...I'm here for you Scout xx
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?
hi guys..
saw the doc today, a different one to normal and guess what... he completly dismissed the B12 issue! surprise surpirse... said 272 was fine and my MVC was well in range so it cant be the problem,i told him id spoken to people with b12 levels higher than mine who have been treated for low b12 or have been found to have a hidden deficiency - he started going on about how theres a whole big industry in america of giving people b12 injections just to make money.
then i tackled candida... and he said not to belive it becasue theyve never actually seen candida in the gut in a colonoscopy or endoscopy.. its only ever in the mouth, vaginal thrush or in the asophugus... so he basically fobbed me off with candida being a fad as well.

i am sick of getitng NOWHERE!
it felt like a councelling session he just keot going on about my past, family events my anger towards my father etc and bascially said nothing about my health... but said a lot about chinese medicine and the conection between emotionl health and the 'chi'. so i think its safe to say he thinks its all in my head to.

i gave him a list of symptoms and it semed like as soon as i looked at them he pretty much decided it was in my head.

feels like im just meant to be ill, ill never be able to have my own life.

he wants me to go back for another 'chat' next week.... in the mean time i was given more anti depressants and sent on my way... horay!
hi help wanted...What A Nut that dr. sounds like!First of all did you mention how an MMA test will point to a hidden B12 deficiency????Next you said you have a high acid count in your body...so that right there is "evidence" ...because B12 neutralizes the acid in the body.

Sorry I don't know what else to say except you need to see a Hematologist....and NO the medical industry is not trying to PUSH B12...that dr. is very ignorant and "out of his league"..was he a GP?Lt me tell you this>I would find a dr. to do the MMA,Homocysteine and folic acid tests for you and if they come up elevated I'd go talk to an attorney and file a misdiagnosis case against that dr.That's my opinion.

So sorry you had to go through such humiliation from that dr.Oh yes and by the way you should have told him that the medical industry is PUSHING anti-depressants on everyone to make more money AND the drs. who hand them out are just too plain old lazy to investigate their patients symptoms.

Don't give up.....try to find a dr. that will take your symptoms seriously..I'd call a hematologist's office and tell them you have a low end B12 level and your sister is a nurse and said you need to get those other tests(I know this sounds funny,but you need those other tests).Just ask them if they could ask the dr. if it would be a possibility that you have an "occult" B12 deficiency...that way it sounds like you are not telling them you know you have one,okay?

I wish you well...post back....we're here for ya!Take care!

Scout~
help wanted,i live in the uk ,my gp said the same to me that i dont need no treatment ,my b12 is or was 227 said my symptoms sounded like i have problems with my nerve endings so is sending me to see a neurologist,what level must we be befor doctors will take any notice why check b12 if they dont know what to do with it,how low must we go,i only hope the neuro will listern to me take care shirley:confused:
[QUOTE=help wanted :(;3781016]hi scout... thanks for that, thats what i thought.
also.. i need to know exactly what hidden b12 def is... becasue my doctor didnt seem to know what i was talking about...
i mean i know what b12 def is... but how do you get hidden b12 def? how can you have a low normal b12 level but hidden b12 def? i need to get this striaght to argue back with him!!![/QUOTE]

Hi, I think maybe you're looking at this backwards.

It's "hidden" when your blood shows [U]normal[/U] levels, but you have symptoms. So it's not hidden at all to you, but a doctor may tell you there's nothing wrong with you because the blood test shows normal levels of B12.

I forget exactly how this happens, but I think if your folate is off it can make your B12 levels appear normal even though they are low.





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