Thanks for the links, I checked them out, it appears from WUSTL (my neuro verified this yesterday) that for elevated B6 to be of concern it would have to be 10x upper limit of normal (Normal 40–120 µg/l), and mine was 189...so he pretty much said it was probably from foods I have been eating as it was suppose to be drawn after fasting (which it was not)...

On a side note, had my follow up with Dr. Freeman @ Beth Israel who is suppose to be a world renowned expert in autonomic dysfunction/SFN...

He said all relevent tests have been done and that I am one of the idiopathic..I started listed off testing for various heriditary, AB's, toxins, etc. etc. and he said I just dont have the symptoms, I've had 18 neuro evals by 7 different neuros and everyone has been perfect (all sensation, gait, motor function, EMG, etc.) as well as 2 autonomic tests which the cardiovagal, adrenergic, and sudomotor evauls were all normal both times...

Only abnormality was the auxiliary evaul showed "mild" POTS with no resulting hypotension and of course the skin biopsy showing "mild" SFN @ the thigh..

Easy for him to say when I feel so awful, but he said he is almost 100% certain (due to my age, general health, onset, symptoms, etc.) that is is all due to an infection (maybe EBV, cytomeglovirus, etc. all of which I have raised IGG for) that I came down with in Feb.

I've just returned from vacation and found this thread.

It will take me a while to tease out some info for you.

My initial questions are these:

1) How many endoscope procedures have you had total?
Did you know there are consequences to endoscopic procedures?
The equipment may be contaminated and information is coming to light to on this problem. Your tongue issue may be due to the procedures...a consequence of damage in the mouth or back of throat.

2) were you tested for parasites? Did you have elevated eosinophils? Which white blood cells were abnormal?

3) I agree with Glenn... you need to supplement B12 and D3.

4) Are you still urinating so often at night? This is a big clue to hidden impaired glucose utilization. It can often happen when you start to lose weight suddenly, too, as water is shed with the fat lost. But there are serious things that cause frequent night-time urination. So I hope that is over.

5) Were you tested for all the hepatitis variants?

6) Some Gluten intolerance is not genetic, it is acquired. It may be due to frequent use of OTC or RX NSAIDs.

7) Did you use any antibiotics in the past or recent past? Fluoroquinolones? Like Cipro, Levaquin or Avelox

8) do you get any vaccines at all?

9) You might want to consult an Environmental doctor to investigate that elevated arsenic level.

10) You can be high in B6 if you eat fortified foods. Cereals and energy bars, and some other carbs, often have B6 added.
The general testing for blood B6, does not show pyridoxine and active pyridoxal separated. Pyridoxine is not active in the body.
Pyridoxal is derived from pyridoxal kinase enzyme in the liver converting the pyridoxine.

11) low folate is concerning considering that it is also commonly fortified in foods today. You may want to try taking the active methylated form called MetaFolin, in case you are a non-methylator, which is genetic. Did you have testing for MTHFR mutation? It is a DNA test. If you don't methylate properly you will be low in B12 also. So when you take the B12 supplement choose the active methylated form-- methylcobalamin.

16 doctors is a huge number IMO. One thing to keep in mind when you consult so many doctors is that typically they will NOT tell you if you have an iatrogenic issue. Meaning... doctor caused. They have a "code" which protects each other. Many complex problems that follow an initial medical visit and testing, may be iatrogenic in nature. If this is the cause of your further problems, getting help for it will not be an easy task.

Hi Mrs. D, hope you had a great vaca! Here is the answers to the above:

1. I had one in 2007, one in Feb. and one in Apr., I also have one upcoming in a few days. The mouth thing I describe is very sporadic, might be noticeable one day for a few hours than not for 5-6 days... kinda weird.

2. I have been tested for Ova + parasites several times all negative. Eos are never elevated, always right in the middle or low end of normal range. It doesnt say which WBC's were abnormal, just says that 8% atypical were found (they are thinking it may have ben an error though, as the very next day they were retested @ Brigham & Womans and it came back as 1%), this was back in April.

3. Went and got the D3 and 12 today

4. I am still urinating frequently (not as frequently as earlier on) I would say maybe once during the night.. but pretty often during the day. Neuro also has me shooting for 3-5L of fluids a day so that may be contributory.

5. I was tested 3x for hepititis, all negative, not sure of the varients though, testing doesnt really mention. Liver values are always perfect too.

6. With the Gluten, it gets raised quite often but I have had every immune, IGG, IGA, biopsies, genetic test, etc. performed multiple times and they keep coming back negative... it would make sense but my docs just keep saying its not possible or like .0000001%. They are going to do multiple biopsies when I have my colonoscopy/EDG next week. Regarding NSAIDS, I have actually never used any, maybe twice in my lifetime.

7. Antibiotics, not really, just in the past month been on Doxy to treat potential lyme, but thats it (and all this started long before the Doxy use). Prior to that maybe once or twice in my lifetime (10+ years ago) but always tetra I think..

8. Vaccines... I def. got some when I was younger, pretty sure they required them for the schools I went to, not sure which ones, just whatever the norm are. I havent gotten the flu vaccine for atleast the past 5 years, just refused it.

9. They retested the arsenic level a month later and its still exactly 13.8, just out of the range of normal. My PCP thinks its very interesting and cant explain it, he did just order a 24 hour urine fractionated? said it'll give us a more accurate reading. I will look into an environmental Dr. tho.

10. As for that elevated B6, they just retested it yesterday, this time fasting and it was down to 29 mcg/L, well within the normal range, they are chalking that elevated one up to me not fasting prior to the test... does that sound right to you?

11. Regarding the folate, they also retested that yesterday and it was pretty low, 16 with ref. range 5.3-99... homocysteine came back 10.3 nmol/mL range 0-14; methylmalonate came back .11 nmol/m range 0-.40...

I've had B12 tested a few times during all of this, results were around 450, 550, and 700 at different times. Havent had it done in about a month. have also not had the MTHFR mutation but will look into it.

16. Lol the list actually just grew to 18 since I posted this, just saw hema/oncolog specializing in Amyloidosis, MGUS, and paraproteinemia... I hear ya regarding being iatrogenic in nature. I am just not sure though, 1. all of my symptoms and illness were present prior to seeing any o the 18 doctors; 2. I have yet to be put on any medication for the current issue and in the past I havent been on any medications; 3. I havent really had any "invasive procedures" i.e., surgeries, etc... ever in my lifetime... I'm just not sure how I could connect it that way.

If there are any tests you think may be relevant please let me know, its greatly appreciated (I may have already had them as I didnt post everything but..) or anyother advice, etc.

The most recent tests I have had are free light chains, SPEP & IEP, ANA titers and quantative immunoglobulins, all which came back good, waiting on cryoglobulins..

Also having repeat skin biopsy done @ Mass General next week, as there is some dispute over the accuracy of the first one done at Umass... apparently the report contains some statements that are contradictary, such as "sweat output was normal at all locations tested" and then a sentence later "QSART test revealed sweat output decreased distally by 33%"... so the neuro's @ MGH said the report is not reliable.

One other thing, the reason they tested for the methylmalonate and homocysteine was to get a more accurate picture of B12?? not sure how that works but what do the above levels say about my B12?

I read the B12 post about how B12 levels can be in normal range but mthylmalonic acid & homocysteine can show an absorption problem...


Thanks

In people with the MTHFR mutation, a serum B12 may show normal. But since they do not methylate properly, that test does not discriminate between the types of cobalamin present.

MMA is a specific indicator to show that the B12 in the body is WORKING. B12 is needed to reduce MMA in the blood and so it gives further evidence in this regard. So measuring MMA is considered helpful in determining if the B12 present is really biologically working.

Some labs do vary in reporting ranges for homocysteine, however. A reading of 10 can be considered a warning. From what I have seen over the years, anything over 8 is considered problematic.
example:
http://andrewwilmot.blogspot.com/200...ne-levels.html
The 3 vitamins involved with homocysteine metabolism are
methylfolate (activated folic acid)
methylB12 (activated B12)
P5P (activated pyridoxine aka pyridoxal 5 phosphate).

It might be a good idea to get the MTHFR mutation DNA testing done just so you know if you have one of the polymorphisms of this. It is not that expensive and can prevent things further along with aging if you have this.

The "abnormal white cells" could be a way of saying... the older term "a shift to the left".... this happens when immature white cells are seen in a differential CBC result. When a person has a serious infection and the body cannot produce white cells fast enough, immature ones are released into the blood, and those show up. An example:
Years ago when I worked midnights, I came down with Shingles.
I had a cellulitis with it, and then developed a very high fever.
This was a pneumonia or pneumonitis that developed next, in spite of the antibiotic I was already taking.
I went to the doctor again, had the CBC differential run and it showed this serious "shift to the left"...And my doctor was stunned and very worried. I had to stop midnight rotations, and she put me on another antibiotic and that seemed to do the trick. So I wonder if that was what your abnormal white cells were reported as?

Gluten intolerance sometimes does not show up in testing. This is because the gluten is entering the body thru Zonulin channels in the membranes of the GI tract. You can Google Zonulin for a long explanation of this. The gluten peptide in genetic celiacs will actually damage the villi and show up in biopsies, but even then not 100% of the time. Zonulin opens "pores" between cells lining the GI tract, and they allow peptides and other large molecules to sneak into the body.
http://en.wikipedia.org/wiki/Zonulin

Some gluten intolerance just increases the sizes of these pores and allows things to pass (including the gluten peptide) and enter the body, leading to various autoimmune problems. So going on a gluten free diet may reveal to you some changes, and improvements. If this happens, you will know that the testing in your case is not 100% reliable.

Also damage to patients from endoscopic procedures is coming to light:
http://blogs.hcpro.com/osha/2010/09/...paign=20100901

http://www.hcpro.com/INF-255900-6987...y-concern.html

http://www.fda.gov/MedicalDevices/Sa.../ucm190273.htm

This article contains lists of pathogens that may be transmitted by endoscopes:
https://docs.google.com/viewer?a=v&q...ric5XJWULH4v-g

Candida:
This yeast is very common. It creates a chemical byproduct called aldehydes which are difficult to metabolize by some people. Increased aldehydes can give many confusing symptoms.
Have you been tested for Candida? One GI thing you can do yourself is to use Kefir 4-6 ounces a day. This fermented dairy product is like liquid yogurt, but it has many more probiotic organisms to re-establish your gut to a more normal function.
I did this last Sept with great success and have a new lease on life as a result!
http://lifeway.net/Products.aspx
The smoothies are tasty and not expensive, and will help many people with vague GI problems. Your use of doxycycline would put you in that category, since this drug is hard on the GI tract.
So please try this... you might be just as amazed as I was.

Exposure to arsenic can cause neuropathy and GI symptoms.
You can get it from contaminated well water, from exposure to and handling pressure treated wood, inhaling smoke from burning pressure treated wood, from criminal behavior poisoning (this is an agent used by poisoners to kill a victim), exposure to some ant poisons.
http://en.wikipedia.org/wiki/Arsenic_poisoning

I'd consider following this clue.

I guess I am still a little confused, I kinda get how the various B-vitamins work together, but I am confused at how my numbers fit in with that...

It looks like my b12 is at an ok level, however this may be pretty irrelevant pending on the MTHFR mutation. Folate is low, as is MMA (but I want MMA to be low? because this shows the B12 that I have is working?)... so since the MMA is low, it follows that the B12 I have is working.

But on the other hand my homocysteine is in the high normal which is not good (I don't get why its high normal...maybe because my folate is low for some reason?)

Also, I am assuming from my numbers, the NLD-SFN they found is most likely not being caused by a B12 deficiancy...and def. not from an elevated B6 since that was ruled out with the follow up test.

Last time I looked, there were 25 variants of the MTHFR mutation.
Some affect methylation at various points. Folic acid has to be methylated to work in the body. So does B12.

This chemistry is very complex. But today in US it is not common for people to be low in folate. That suggests a problem of some sort, because our foods are fortified with folic acid.

Typically when people have low B12 there is a corresponding low in folate. You have the reverse. While I am not an expert on methylation chemistry, I do think your test results are confusing. And yes you want MMA to be low to show B12 is reducing it in the body.

There is another way to test for nutrient status and it is believed to be more accurate than serum testing. It is called intracellular testing and reveals what is inside the cells and not just floating around the serum.

Here is one example:
http://www.spectracell.com/

Some of the newer holistic (also called integrative) doctors, chiros and naturopaths are testing this way.

I think you should explore what you see so far in your testing.
Elevated arsenic is a start. Going gluten free would be something you could do without spending more money on doctors.

Activated folate is available OTC as MetaFolin 800mcg by Solgar.

Just got some more test results back...

Had fat pad biospy, free light chains, serum protein electropharesis, immunoelectrophoresis, and cyroglobulins all come back 100% negative, thus ruling out amyloid and MGUS, which I suppose is a very good thing but still leaves me in the dark.

Getting sooooo sick of docs telling me I had "some" infection back in Feb. that damaged my autonomic nerves, and I'll just get better!! Like some miracle is going to take place...

Yes, those negative test results are a relief for you.

There are infections, that affect the nerves. One is common from poorly cooked chicken called Campylobacter. It can affect the nerves. It was highlighted on Wrong Diagnosis on Discovery Channel. Some of those shows are available on the net, if you want to find it.
http://www.cdc.gov/nczved/divisions/...campylobacter/

We do get people here who have developed PN symptoms following viral or bacterial infections. Some do get better but that takes a year or more usually. That is little comfort for the present though.

I would get that arsenic looked at .... arsenic causes neuropathies. Look under "integrative" or "environmental" doctors on Google for your area for that. Most regular doctors don't know much about poisons.

I hope for your sake you don't have some result from those endoscopes. If you see an integrative physician be sure to tell him/her about them.

I'd also go gluten free, for at least 6months to see if you feel better. It might be revealing and helpful for you. Get that Kefir, too. And integrative physician will test you for Candida. The aldehydes that this yeast makes puts a terrible strain on your system giving all sorts of confusing nerve symptoms. Benfotiamine (a form of B1)300mg a day may help you if you think you have Candida. It supports the enzymes that remove aldehydes from the blood. Your bloating, nausea etc could reflect that. Doctor's Best brand is a quality one that is affordable as well.

So I talked with my neuro...they agreed regarding the arsenic, and did a 24 hr. urine test because its much more specific and accurat than the blood test due to arsenic half life in the blood.

Urine came back high:

Total urine arsenic was 187 range 0-35 mcg/spec
Arsenic Concentration was 75 range 0-35 mcg/L

They are concerned, however because I ate some fried haddock/clams a few days prior to the test they are going to fractionate it and have me redo the test...

Could a small piece of fried haddock (4 oz.) and like 6 fried clams really raise arsenic levels? I read somewhere that its not abnormal to have readings up to 2000 mcg, shortly after consuming a meal heavy in shell fish but justseems wierd...

Also I keep seeing posts about getting MRI looking at the DRG for damage.... I mentioned it to my neuro (3different ones) and they all said it wasnt something I needed for multiple reasons including the fact that I have no findings on EMG and no other neuro examination abnormalities (i.e., gait, reflexes, strength, is all completely normal)...they said if there were something going on with the DRG (neuronopathy/gangliopathy?) then there would be some abnormalities somewhere in my examinations...

Is this true? they told me to stop worrying about that and it isnt a consideration in my case...