Quote:
Originally Posted by mrsD
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.
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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.