General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below.


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Old 02-19-2009, 10:35 PM #1
tigerlady tigerlady is offline
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Default strange, uncertain and anxious

May of 2005, i went to the clinic with what i thought was pleuritis, turned out to be bil PEs, worse in the lower left lung went thru the wonderful course of coumadin which worked, but no one had any idea how i got them..a thrombophilia work up was neg, I was taken off of birth control pills as a precaution although was not considered the sourse..then about 2 1/2 years ago i had started having problems staying asleep and was tired all the time..In the beginning of 2008, multiple sleep studies showed no REM or slow wave sleep, severe disruption of sleep architecture and sleep fragmentation, the sleep doctor didnt know what to do so referal to neurologist..In June 2008 I had a MRI of the brain which was essencially normal but bloodwork showed a PQ type calcium channel antibody and a positive striational antibody titer, elevated complement C3 and C4 with a sed rate of 68 (done at Mayo) otherwise all else was neg..after the labwork and before the MRI, I took a pit stop at the Gynocologist and had an endometrial ablation with tubaligation for chronic bleeding..2 polyps were removed and neg for cancer..so it was now onto the onocologist/hemo MD.. i went thru a PET scan (eyes to thighs), abd/pelvic and chest CT scans which were all negative..CTs were repeated twice over the past 6 months.. In July of 2008, labwork again from Mayo showed positive muscle and P/Q calcium channel results..some other lab work was done in August which showed elevated alpha 2 globulins..Jan 2009 labwork shows neg striational AB test and still positive P/Q calcium channel results.. I am not happy with my current Onocolgist so I got my records from his office.,I got a referal to the head of ono/hemo at my local hospital and have appt March 2..my neurologist has been left out of the loop so I know to catch her up..I am very confused as to what all this means..oh and my meds were ruled out as any interuption of tests..im on disability for PTSD, chronic fatigue and have had hypothyroidism since 18..all TSH in the past year have been within range..Any ideas, advice, or reccomendations would be much appreciated..Thank you so much.
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Old 02-20-2009, 09:48 AM #2
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Lightbulb

I would like to know what drugs you are taking?

Your doctors may not think they are contributing but most doctors do not know how RX drugs deplete the body of nutrients which may be contributing to much discomfort.

For example, if you are low in B12 you may have terrible sleep disruption, because methyl B12 --the active form your body uses--is responsible for the synthesis of melatonin which is the sleep hormone. In addition there are new studies showing melatonin receptors in the pancreas may not work properly and contribute to Type II diabetes. Melatonin is also showing up as
blocking NMDA receptors which are activated by calcium, and low melatonin therefore may therefore increase pain levels.

So just being low in B12 (or using a drug that depletes it further) may disrupt alot of other systems in the body.

If you prefer privacy you can PM (private message) your drug list, and I'll check the reference I use.

This site explains it a bit more:
http://www.enotalone.com/article/4624.html

Many things can happen with drugs... never underestimate them!
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Last edited by mrsD; 02-20-2009 at 10:23 AM.
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Old 02-20-2009, 10:20 AM #3
tigerlady tigerlady is offline
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Default thank you

one of my lab tests they did test for B12..i was wondering why they did that..now i know..oh, it was normal..but thank you so much for shedding some light!!
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Old 02-20-2009, 10:50 AM #4
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ohhhh, you need to get the result of the B 12 test.....their normal and the real world normal are not nec. the same ! in other words this could be a problem and they wouldnt know...
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Old 02-20-2009, 12:08 PM #5
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Quote:
Originally Posted by tigerlady View Post
one of my lab tests they did test for B12..i was wondering why they did that..now i know..oh, it was normal..but thank you so much for shedding some light!!
"Normal" means nothing these days. The US considers very low levels as normal. Anything below 500 should be supplemented.

This is one of the most commonly overlooked results, and brings people to places like this in DROVES!

Get the number to make sure.

Drugs that deplete B12 or prevent it from being absorbed properly are:

acid lowering drugs -- both H2 antagonists like Zantac/Pepcid and proton pump inhibitors like Nexium/Prilosec and others in both families

Antibiotics (this would be long term use for chronic infections and Lyme)

Metformin (for PCOS, insulin resistance, or Type II diabetes)

Hormone therapy (birth control or HRT)
Colchicine
some antivirals for HIV

I searched you and found your question at another forum.
I'd like to say this....
While it is amazing what modern testing can do, it may not give
you answers you can use. You may have what was discussed there, or
not. What patients and doctors often lose sight of are the
things that are very obvious when looking for the obscure.
Do not assume that Mayo is the ultimate in medicine. Many people
go to Mayo and do not find the answers they expected.

What I do here is pull together information doctors may ignore.
The body is complex, and many things can be happening at once.
And often those get lost in the shuffle.

Oh, and BTW... I seriously doubt any of your doctors know about the new
melatonin information. Serum B12 testing is typical during a neuro screen. The sad part is that in the USA the "normal ranges" are vastly out of date and will confound your
treatment rather than help it.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.

Last edited by mrsD; 02-20-2009 at 02:28 PM.
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Old 02-20-2009, 08:53 PM #6
tigerlady tigerlady is offline
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Default thank you

thank you so much for the information..yes i did post on web md..when i am faced with something i know nothing about, i like to get as much information as possible..nice thing about the internet, i can reach ppl from all over the world..like you said, people may say things that someone has not thought of..i looked at my results and my B 12 is 616..your right, the normal range for the lab that did this is 211-911..i also have a folic acid result of >19.0..can you please tell me or direct me to a web site that can explain how melatonin affects REM and short wave sleep?..again, thank you so much for taking the time to reply..
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Old 02-20-2009, 09:43 PM #7
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Lightbulb

http://jcem.endojournals.org/cgi/con...ull/88/11/5315

There are two types of blindness. This study was done with totally blind patients.

Other forms of blindness the patients see light and would not
be good subjects for this test.

There are melatonin receptors in the normal retina. It is thought that these receptors are connected to the circadian expression of melatonin for night sleep.

Another:
http://www.lef.org/magazine/mag96/oct96_abstracts.html

http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0

http://www.ncbi.nlm.nih.gov/pubmed/9...?dopt=Abstract

Effects of drugs and nutrients on melatonin:
http://www.spineuniverse.com/display...ticle1105.html

http://www.umm.edu/altmed/articles/melatonin-000315.htm

If you still use Coumadin, taking melatonin is not advised.
You could still encourage endogenous production with
methylcobalamin.

A reading in the 600's is just above borderline.
You probably could benefit from 1mg daily of oral methylcobalamin which is not expensive.
example:
http://www.iherb.com/ProductDetails.aspx?pid=129&at=0
local stores typically do not carry this. Most of us buy it online.

In some other countries 500 is the cut off for treatment.

Also with the new information coming out about Vit D and the new data surrounding it...you should get a Vit D test done to see if you are low. Many people on the net on forums like this with neuro issues and/or chronic pain/fibro and other problems benefit from fixing blood levels to the normal range.

http://www.vitamindcouncil.org/
from depression, cancer, osteoporosis, etc are finding improvements with this new information.

B12 and Vit D are the two most obvious new issues involving hidden deficiencies.

There are others however, which you can explore later.

I found methyl B12 very helpful during my menopause. I had terrible sleeping problems then...that was my main complaint.
I used and still use 1mg daily. And my levels were 849 on testing before using it.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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