There is another thing, I just remembered, another factor.

This is unpleasant for most people, but it DOES happen.
Tapeworms live off of us and will absorb nutrients from our food, so we cannot benefit from them. B12 is the most affected because the host develops neurological signs most obviously, and appears in the studies most commonly. But other nutrients would be affected too.

http://www.diagnose-me.com/cond/C641747.html

Diagnosis and removal of these parasites should be done by a doctor (it is not a do it yourself project).

Mrs D,

Thank you so very much for your replies to my post.

Apologies for the kidney function comment; I re-read it and realised it must have sounded a little weird, so to clarify I should probably say that I've had major kidney problems in the past from nephritic and nephrotic syndrome caused by APS (in the form of both clots and inflammation, quite a nice combo) and leading to acute renal failure and major proteinuria with macroscopic hematuria. All that was, thankfully, reversed with treatment but the fact remains that my kidneys have been a little damaged from their ordeal and thus leak protein and blood pretty much constantly (and that's basically what I meant when I said kidney tests were fine; that no new disaster has occured and that the blood tests re kidney function are ok! )

Re the tapeworm/parasite angle: I've had a comprehensive stool analysis done along with blood tests (for specific antibodies) and everything came back clear. You're right though; it can and does happen and the fact that it's mildly unpleasant can't magically make it go away so...! Thank you for the suggestions and for taking the time to read and answer my posts. I do realise it's a very confusing situation (and rather exhausting if I may say so) and I do hope my medical team manages to find some answers soon

Ziggy

Hey everyone,

Having been in hospital for the better part of last week, I just wanted to post an update on how everything went! I got injectable biphosphonates (and more specifically a med called Zometa) to bring my calcium levels down; this was then followed by injectable vitamin d2 (to the tune of 400.000 IU's). Following more testing it was revealed I had almost non-existent levels of IgG and IgM and combined with the malabsorption issues etc etc the docs felt this to be indicative of CVID (or common variable immunodeficiency).

So I was started on IVIG. Now we had tried IVIG in the past for my APS and it hadn't gone over well at all, so this time I got the lowest possible dose just for one day just so my body could get used to the drug. I still had some pretty wild reactions to it (angina being one of them and resulting in nitroglycerin sprays, running around of docs and general mayhem) but the docs feel the reactions will lessen as my body gets used to the immunoglobulins. I'm supposed to go back in 15 days for a slightly higher dose, followed by a slightly higher dose 15 days after that et cetera until we reach the normal dose for my weight and immune system issues. What I find amazing is that after only one dose of IVIG the oh so persistent diarrhea I've had for months now (sorry if that's TMI!) has stopped and the joints in my fingers are no longer hurting. The heart arrhythmias have also stopped due to the lower calcium levels and hopefully after vitamin d levels normalise with the shot the calcium levels will stabilise too! Oh! I also got b6/b12 shots in the hospital and an intravenous multivitamin drip.

Anyhow just wanted to update you all on how everything went and say thanks again for all your help with everything!!

Ziggy

Wow... that is quite an adventure! Sounds like you have been thru alot!

Let us know how you are doing, and what your diagnosis ends up, being.

Thanks for posting your update.

Hellooo again!

Just thought I'd post a quick update on what's going on!

After getting IVIG in July, I saw an gastointestinal immunologist who felt he needed to get me off the ivig for a couple of months (to avoid false positives) and re-test for celiac because of all the malabsorption issues.

So for what has to be the thousandth time now, I got tested for celiac in September. He tested anti-gliadin IgA and IgG that both came back negative and anti-tTG IgA which also came back negative. But, and this is a big but, the IgG anti-tTG test came back highly positive for the first time ever! The normal range in the lab was under 5.99 U/ml and my result was 78.6 U/ml!!! A couple of weeks later the test was re-done and was still positive. So I've stopped eating gluten (with a few set backs along the way involving bread and pasta) and after getting the celiac tests over and done with I re-started the IVIG for the CVID. I did four iv doses in September and October, 25 grams total each month (every two weeks), and because of the pretty severe side-effects the iv version was causing I was switched to sub-q infusions right after my first October IVIG infusion. I am now on Subcuvia 35 grams a month and although my experience with it has not been side-effect free by any measure; it most definitely has fewer and less aggressive side effects than IVIG for me.

On a different note I'm still on 5000 IU D3 a day and am still wildly iron deficient (my last ferritin level was 2 after months of supplementation) but other nutrient/vitamin/mineral levels have started normalising and I'm no longer anemic! To wit my calcium level is on the high end of normal (10.8 with the limit being 11) but hasn't gone off the charts again since July, my b6 and b9 levels are normal, b12 is 340 so it still needs some help but we're getting there (I'm on daily methylcobalamin supplements for that, 1000 μg) and magnesium levels are getting close to normal after months of supplements! Zinc levels are also pretty close to normal now!

My calprotectin levels were also off the charts during the summer, but are within the normal range now. On the other hand a lactulose/mannitol challenge done just a couple of weeks ago was indicative of nutrient malabsorption still there, but I think the GI tract may need a little more time to recover...

Serum potassium and bicarbonate levels are still low, but I'm only mildly neutropenic (3000 WBC) with a normal platelet count (finally!) and CRP within the normal range.

The most recent amino acid analysis (after months of protein shakes!) was very encouraging with only levels of lysine, valine, β-alanine, alanine, cystine, glutamine, glycine, tyrosine, β-Aminoisobutyric Acid, cystathionine, ethanolamine, phosphoethanolamine, ammonia and urea being deficient. I know that may sound like a lot of things are deficient but compared to the first amino acid analysis done in June it's an incredible improvement!

Ooooooof! So that's my news!

Ziggy

Thanks for the update! That gluten peptide sure is hard to nail down!

You have sure been thru alot... but the improvements look good.
And I sense an upbeat tone to your post as well!

Keep up the good work, and healing...and posting here, will undoubtedly help others who come to read here as well!

hmmmmm....hmmmmm..., Oh, okay, i will be good.....i am glad you are doing better

Hellooo again and Happy New Year!!!!

This post is about a different topic than my previous posts here, but I thought I'd post in the same thread for the history-aspect. I hope that's ok!

About a week ago I started taking one fish oil capsule a day (I'm not sure I can mention the brand name here but the concentration is EPA 580 mg, DHA 83 mg). Three days ago the right side of my neck swelled up and my internist, who saw me this morning, diagnosed cervical lymphadenopathy and prescribed Zithromax. I should probably add at this point that even though my neck is painful and tender to touch, I don't have a temperature and don't feel run down.

My question is basically this: since fish oil is the only thing I added recently to the pills/supplements I take and the lymphadenopathy followed shortly after is there any way the two could be related? I mean is lymphadenopathy or swelling of the lympth nodes of the neck a known side effect of fish oil or fish oil of that dose/EPA-DHA ratio or...?

I know a lot of people here take fish oil so I was wondering if anyone has ever come across this before or if it's completely unrelated and just a coincidence!

Thanks for reading! ::

Ziggy

It is hard to say. Coincidences do happen.

Lymph nodes may be from teeth, or a viral infection. When painful that typically means infection of some sort.

Painless ones... those are the ones to watch.

Is there a reason for so much EPA? I am asking because the DHA is also important for nerve functions and cell membrane maintenance.

High EPA is traditionally given for inflammation, to reduce it.

The only way to test this is to stop it, and restart in a month.

An allergic response, would be more global in the body, and typically not on one side of the neck.

Have you had chicken pox? If so, those low lysine levels, may lean you toward shingles...which tend to present on one side of the body.

You'll have to wait a bit for the antibiotic to work.

These are just my thoughts.

Helloo Mrs D,

Yes! I was very happy indeed the nodes were painful; I'd take painful ones any day over the painless kind...!

My internist actually recommended the high EPA capsules. He wants me to get off spironolactone at some point that is doing a dual job as it were, keeping potassium levels up and regulating hormones a little because after the cytoxan a couple of years ago they've been a little wacky. Apparently I can take a potassium supplement for the hypokalemia if I go off spironolactone but hormones would be a little tricky as I'm prone to clotting and so we can't go down that route. He said fish oils and EPA especially can helps hormone regulation a little bit, so that was the main reason there... Toning down inflammation would be a nice "side-effect" of EPA too, though the scig is doing a very good job at that so far so that's good!!

I've never had chicken pox and actually haven't even been vaccinated against it. Wouldn't one get some sort of skin eruption with chicken pox or shingles though? Or can that appear a few days after initial onset of symptoms?

What you say about the allergic response makes sense! Oddly enough I took 200mg ibuprofen yesterday and the swelling went down about 50% within an hour, so I don't know what, if anything, that means or hints at... I did start the zithromax in any case and didn't take my fish capsule yesterday and I shall re-start it in a month!

Thanks so much for the reply and for the information!

Ziggy