Here is some info on the shellfish/arsenic issue:

http://guideyourhealth.blogspot.com/...s-and-raw.html

There is a post on Snopes, claiming the above story in the link is
not verifyable. But I do know that arsenic can change valence from
+5 to +3 and hence become more toxic.
I think most arsenic issues come from tainted well water.
And some military bases have toxin issues too.
http://www.inthesetimes.com/article/...ps_on_killing/

I really don't know much about DRG testing.
En bloc and Glenn would be the ones to ask about this.

Not sure how I missed commenting to this thread.

I sort of (to some degree) agree with the neuros about not doing the DRG testing with the lack of exam abnormalities or even any symptoms listed indicating sensory or motor issues. It's not like it's invasive or anything, but you seem to have had a fairly extensive work up. You certainly don't have to have positive EMG's to have a necessity for DRG investigation, but without symptoms or anything found on exam, I don't see how they would justify it to insurance. I do also believe you would experience some sort of pain, numbness, or other sensory/motor issues if the DRG was a big problem and cause of your problems.

I do see you have some indication of autonomic dysfunction, but there is many possible causes of this, which has already been mentioned (diabetes, even pre-diabetes, gluten, etc.) Of course there is an autonomic ganglia that could be effected, but again I think you'd see other confirmation of autonomic dysfunction before they'd go on that hunt.

The Lyme can certainly present this way. Have you had tick exposure...do you live in an area were it's likely? Did you ever see the typical bulls-eye rash?

My understanding of Lyme is that treatment can take a long time and you may not notice improvement for a while...and it sounds like you just began this treatment. I'm not familiar with Lyme enough to know whether it effects the DRG, but I'd guess it's possible. Glenn probably knows more about that.

What about any autoimmune testing? Do you have any other symptoms you haven't mentioned...rashes, joint pain, etc?

I just noticed your PM. Hope this answers your questions.

Hi, thanks for the response. Regarding pain or numbness, I do have sensations sometimes, not really painful though, its like a feeling of adrenaline or tightness in my glutes, thighs and calfs, weirdly enough it seems to be its worst 1st thing in the morning laying in bed, and appears the most almost like a cycle around the 6th-20th of each month (I know this sounds very strange).

Numbness, i just get little sensations very sporadic (like maybe my right little toe will feel a little tingley when I run up the stairs with no shoes, then when I touch it with my hand it goes away, or sometimes I get a little tingle in the center of my back, again when I touch it it goes away) these are very sporadic, maybe 5 or 6 days out of the month. Absolutley no motor issues.

Regarding the autonomic dysfunction, this seems to be my big issue. just had my 3rd autonomic testing done at Mass General yesterday, same results as the previous two, all testing (cardiovagal; sudomotor; adrenergic) was normal except for tachycardia on tilt test (indicating POTS w/o other autonomic involvement)...


Regarding lyme, I live in probably the most tick infested part of the country, where lyme is ramapnt, I have had tick exposure in the past (I hike, bike, etc. and have pulled ticks off me prior). However, I never did see any bulls eye rash, nor do I have any headaches/joint involvement...but when this all started I did get a weird rash that came and went and no docs go identify, as the months have gone on, it has appeared with much less frequency, last time about 2 months ago (I can post a pic?)

I have seen two prominent LLMD's here in Mass and both think I have lyme, I am very skeptical though, as I am missing some of the major lyme symptoms and pretty much everything I experience can be explained from the SFN/POTs (I think....)

I have had many lyme tests throughout, which have all been very borderline with some lyme specific bands showing, I will post those in a sec. Been on Doxy for about a month now, w/o any improvement or herx that I have noticed...

Regarding autoimmune, I have seen a number of Rhuem's, had ESR, CRP, ANA, ANCA, RF, anti-ro/la, anti-jo, IBD serology, all tested mutliple times and not the least bit postive for any inflamation or signs of autoimmune... I am not sure what other tests might be relevant but I am open to seeing another Rhuem.

Have had immunoglobulins tested twice:
4/13/12: IGG 1110; IGA 298; IGM 61
8/27/12: IGG 1010; IGA 282; IGM 52

They have all lowered a bit, but immunologist (specializes in mast cell disorders) says these are very good numbers and completely normal for them to fluctuate...

Can't really think of any other symptoms... I think I mentioned, Ifelt very ill with GI stuff back in Feb., lost about 20 lbs. in a month or so which is a lot for me, havent lost anymore since then but also havent gained any back no matter what I eat.. ngs seem to wax and wane but I never feel anywhere near normal.

Throughout all of this I have had 5 western blots and numerous co-infection testing:


1. Imugen 2/28/12

IGM they dont perform
IGG 41


2.Imugen 5/18/12

IGM they dont perform
IGG 30, 41, 39


3. Mayo 6/11/12

IGM none
IGG 23, 41


4. LabCorp 6/25/12

IGM 23
IGG 23
CD-57 238 & 11.9% ref. range 2-17%
all coinfection negative


5. Igenex 8/7/12

IGM 41 IND
IGG 23 IND, 34 IND, 39 IND, 41++
IFA Test: 40 (equivocal)
Multiplex PCR: negative all around


6. Quest 8/9/12

IGM 23
IGG 23
all co-infections negative

Well, you certainly haven't lacked in a full work up. The only test I don't see that I think would be worthy is a gastric empty study. With your GI complaints and autonomic dysfunction, gastroparesis (delayed gastric emptying) seems possible and would explain all the GI symptoms.

How's your BP? With the lightheadedness and dizziness, it would be good to check your BP during these episodes. Drops upon standing is consistent with the POTS and would explain the tachy rates as the heart tries to compensate for drops in BP. Treatment options are many to control this and alleviate part of your problems.

Of course, what's causing all this is unknown but Lyme can certainly present with autonomic dysfunction and SFN. With your positive tests this should be considered as the culprit. Autoimmune disease is known to cause false positive lyme tests but your autoimmune work up looks to be thorough. The only thing I don't see testing for is Sjogren's, but you don't mention any dry mouth, eye, fatigue, or joint pain.

BTW, a month of Doxy isn't very long. I had a friend (a farmer who was in great shape) that was in bed for two years with Lyme. Not that this will be your outcome, but Lyme can be bad and cause all kinds of symptoms without rhyme or reason.

While I wait for your reply, I'll search a little to see what I can find on Lyme attacking the DRG. I'd bet it's possible, I have just haven't seen it spelled out in writing yet.

So just got the arsenic fractionation back and its pretty much all "organic" most likely from the seafood I ate prior to the test and not contributing to any of my symptoms...

Funny you should mention gastric emptying test, I actually had a 3 hr. one done back in Apr. which came back perfect. New GI said even people with GP canhave good days so I had another (albeit shorter one, 90 min., laying down the whole time) done last week, just got results a few minutes ago and says its fine again..

I have been keeping a bp/hr supine/standing log for the past 3 months, 2x a day, to track this stuff for the neuro's. BP runs lower than before all this happened, my average is around 108-68, I dont have any blood pressure issues upon standing, just the tach, hr jumps from low 60's to high 90's, sometimes 110-120 range and hangs around that point. I've tried the high sodium/fluid diet an dexercise w/ no luck..

I do have some dry eye (but had lasik eye surgery 2 years ago, which can cause dry eye) and some dry mouth (but I have a deviated septum, which makes me sleep with my mouth open, which could cause this). The sjogrens work up I have had, is the anti ro/la ab's, I guess those are generally present in sjogrens. Rhuem said they'd do a lip biopsy if I want to completely rule it out, but I have heard horror stories of these and would rather have a lip ultrasound done first...just gotta find a rhuem that will order it.

I guess if you do not really think it sounds like my DRG is being affected then I wont continue to press for it, just wanted to get an opinion outside of the various neuro's I've seen. They are all suppose to be good docs, and I've now gotten the same opinion regarding the DRG from several at different hospitals.

I am going to stick to the biotics, just hard when I am not seeing any results and continue to feel horrible everyday, pretty scary, but I guess it could always be worse...

I am very afraid of missing something underlying that may be causing my symptoms, and now I am into reading the stuff about CFS, candida, and various latent chronic viruses (EBV, mycoplasma, and cytomeglovirus, all of which I have elevated IGG but negative IGM levels of)

Oh, and a few other symptoms I noticed I didnt mention:

(1) I have noticed a lot of hair falling out, not huge clumps or anything but when I run my hand through hair comes with it, every time.

(2) I am urinating alot, it seems like through all of this urination has been up, and I wake up a few times to urinate, usually very early in the morning...

my most recent 24 hr. urine test I had to cut short because I filled the 3L bottle and still had 3 hours left in the test (in which I went a few more times) would have ended up being around 3.5L's of urine in 24 hours...

I am wondering if you were tested for Carcinoid?

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001387/

http://www.oncolink.org/types/articl...TOKEN=67620440

The rash, GI upsets can come with this. Not all of the symptoms are present in every patient at the same time.

This link gives the name of a blood test which is new that can be useful to screen for this. A positive result would then be followed up with other testing:
http://www.cancer.org/Cancer/Gastroi...mors-diagnosed
Because it is thought that these slow growing GI tumors are rare, they are not often looked for by doctors.

So go back and see in your blood work if the Chromogranin A test has been done for you.

Here's my thoughts on the 'good day'. You state you have GI symptoms 24/7, so I assume they were present during the test, right? If so, then it's obviously not gastroparesis. If your symptoms were not present during either test then I'd guess it would leave that window open...but only slightly, as I would think even a mild delay would be noted on a 'good day' if this was a significant problem. Of course being tested while you're experiencing symptoms is best, but doesn't always work out that way.

Your BP sounds good. Are they treating the POTS and tachy rates?

Sjogren's patients have dry mouth all day, not just upon waking after mouth breathing in the night. Same for dry eyes...foreign body sensation, gritty, and lack of tear production. I missed reading that you had the labs (SSA & SSB). Keep in mind that only 40% of Sjogren's patients have positive labs. The lip biopsy is required by most criteria for confirmation. Sure there have been some with negative procedures. You'd likely be able to find horror stories about any type of biopsy...or even a tooth extraction or ear wax removal, if you're reading this online. I have talked to a couple people that truly had a bad experience, but most did fine. I have a tiny little lump that's numb, but certainly not noticeable or bothersome. I would suggest though (if you choose to have it done) that you do so in a hospital that does many-- by a doctor with good amount of experience. Ask questions about their procedure, biopsy grading scale, and experience...be an informed patient.

As for the urination. Is your input consistent with your output? I don't see a glucose tolerance test (long one) among your list of completed tests. As MrsD mentioned earlier in this thread, impaired glucose can account for increase urination.

Where was the rash you mentioned? Did it itch? How long did it stay?

Sometimes (most times) diagnostics is like a puzzle. You can spend months(if not years) investigating to find a cause...and still not find it in some cases. You cannot expect to get diagnosed online. We are here just to help explore ideas so you can have intelligent and helpful discussions with your doctor so they may get you some answers. I would suggest that you at least seek out treatment for the bothersome symptoms you have while you continue your search for causes. There are a variety of treatments for POTS and many options to help alleviate your GI symptoms. Discuss these with you doctor.

Chromogranin A was tested on 4/11/12, it was 34 ng/ml, ref range 0-95 (which looks a little high, but I guess it can vary)

Also had urine 5-HIAA test same day, which was 2 mg/g, ref range 0-14

I see my PCP today and will mention the other test though, maybe he will order it.

I totally understand, any help with possible ideas is much appreciated, my docs (for the most part) are open to my thoughts and suggestions, and much of the testing that has been done has been brought up by me, so anything is welcome.

Gegarding the gastric emptying, I was def having symptoms the first time I had it done and also this most recent time, maybe to a lesser degree. I would also think there would be some small sign of delay, but the resuls dont show that. GI insists that it could still be delay issue and says the tests arent very accurate (well then why ever order them, lol). I have a "smart pill" procedure in a few months will Dr. Kuo @ Mass General, all he does is motility so hopfully he'll give a percise answer, doesnt help now though.

Yes, thoguhout, for the most part my bp has been good, never drops much upon standing and does what it should, however itis much lower than it use to be prior to this. Use to run mid-120's/high 80's... as far as treatment, they said they'd prefer not to add meds because the numbers arent severe enough, but considering how bad I feel.. They had me try the high sodium (5 gram) and high fluid (3L+) diet to raise my blood volume/bp but I didnt notice anything. I also read that if you are deficient in certain hormones (i.e., aldosterone, etc.) increasing salt wont help much... might it be worth checking to see if I have the correct levels for the sodium/fluid treatment to work?

Regarding Sjogrens, I thought this may be a possiblity all along, but my version of "dry eyes" and "dry mouth", although a bit bothersome to me, dont seem to match up with what I read people describing online...I'd really like to find a Rhuem that will do the salivary gland ultrasound prior to jumping to the biopsy, maybe if ultrasound is 100% normal, then theres no need for biopsy (atleast from what I read)

Regarding the urination, I am having a 4 hr. OGTT test next week, not sure if they are testing insulin as well though. I cant really tell if I am putting out as much as goes in but I would probably say yes, although I thought the body should retain quite a bit of what goes in no? it almost feels like my body barely retains any of the water, but not really sure how to check this, other than testing certain hormones?

Regarding the rash, it was very strange, I will post a pic later on. It was flat, not raised at all, little pin dots, not itchy or anything (wouldnt even know it was there unless I saw it by lifting my shirt). Usually appeared on my chest, or abdomen, lasted roughly an hour then started to slowly fade. In the beginning it seemed to happen a few times a week, and as the time has gone on, the occurances seemed to spread to once weekly, every two weeks, and so on, last time it happened was probably like 2 months ago.

Again, I am welcome to any and all ideas and things I can raise ith my doctors, other possible conditions to explore, testing, etc.

Thanks