Helloooo! Question about supplements!
 

Hellooo!

I'm pretty new to the forum but not very new to health troubles. I'm 24 years old and have had massive amounts of iv meds in the past three years, more specifically speaking massive amounts of iv steroids (and by massive I mean about 50 grams in total within about 12-16 months) and a full cycle of cyclophosphamide (about 7-8 months of monthly infusions followed by four infusions done every three months). I've also taken oral immunosupressants, oral steroids, blood thinners etc etc.

Even though I've always been pretty thin I used to eat incredibly badly, a couple of bags of crisps a day along with a big bottle of diet coke and 6-7 coffees and that was it most days and I used to be pretty sedentary. I'm trying to change all that now and for the past three months I've switched over to a mostly organic vegan diet (I cheat and eat a little parmesan once in a while!) and I exercise every day. As for supplements I take evening primrose oil, artichoke extract, milk thistle, n-acetyl cysteine and lipoic acid daily and I add a very generous amount of flaxseeds to nearly all my meals . Once a week I take copper and zinc tablets instead of the lipoic acid and NAC. So my question is the following: I have hashimoto's thyroiditis, detected about three years ago, but am euthyroid, and I have an autoimmune disorder that increases the viscosity of my blood thus making it more prone to clot; I really think however that the incredibly poor diet I had for years and the sedentary lifestyle I led probably contributed to my poor health in some ways (if nothing else, my body probably had very little nutrients to heal or repair itself with for a long time). I've been reading the threads on the forum for a few days now and everyone here seems to have an incredible amount of knowledge about vitamins and supplements and their role in health and so I was wondering if off the top of your heads there's something else I should be doing, eating, taking, or someone I should be consulting with to maximize my chances of getting better and to help my body get all the nutrients it has lost either because of the meds I've taken, the ilnesses I have or because of the lifestyle I've had.

Thank you! :rolleyes:

Ziggy

I think you should start with B12 and Vit D tests.

These two nutrients can become very low in people with chronic illness. (and especially in vegetarians)
Vegetarians can also become low in certain amino acids like methionine, which is a precursor to SAMe in the body.

Long term use of steroids also disrupt electrolytes...
potassium and magnesium. If you don't eat whole foods commonly you could be low in both of these too.

People who autoimmune disease may also have Gluten intolerance, so I'd get some tests for that too. If you have this, there can be significant malabsorption of any nutrients you do get in your food. It is like a vicious circle.
You can read more about this and testing here:
http://jccglutenfree.googlepages.com/

Outdated supplements
 

A friend has a collection of supplements (a good brand) that was stored properly and still sealed. I'm guessing that at least some of them would still be good a year or so after the expire date.

Any thoughts? C, calcium, Q sorb, ....

rose

Vitamin C is not stable. It will discolor as it oxidizes and may give you that warning. Of all the vitamins, it is less stable than many others.

The calcium is an inert mineral. It may still be good.

The CoQ-10...? not sure.

signs of decay are:

an odd odor (which differs from fresh)

strange discolorations

tablets falling apart (moisture)

Capsules getting really hard --powder solidifying. (take one apart).

Some minerals like magnesium attract moisture and sweat.

oil based supplements may become rancid--react with oxygen and be harmful when consumed.. they usually darken when this happens.

supplements packed in glass can stay fresher longer than plastic.

The enemies of drugs or supplements are
Heat
light
moisture

Unless packed under nitrogen, a sealed bottle can still degrade.

outdated supplements
 

Thank you!

I had already discarded the vitamin E and assumed the calcium would be good, so I guess I'm on the right track. Thank you so much for the tips. I will relay them.

rose

HI Mrs D. and thank you for your reply! :)

I've had GI biopsies and auto-antibody tests done for coeliac disease and I'm negative for it although I did have iron malabsorption requiring iv iron infusions three years ago. We never did figure out why...

I have blood tests pretty frequently actually and so I can safely say that at the moment I'm mildy neutropenic with a normal vitamin d3 (25) level and a b12 level of 240. The lab range for the b12 is 250-1000 so I'm not sure whether it's a level deserving supplementation or not... All other vitamins are normal and electrolytes are also normal (with the exception of an ever-present slightly low potassium).

I had no idea about the methionine! It sounds very interesting indeed! I will definitely look into this!

Thanks again!

Ziggy

OH....anything under 500 should be treated! and is that Vit
D low normal also?
and if you can. post the celiac testing results.....good luck

Hi Pabb and thanks for your reply :)

Anything under 500 should be treated!? Really?

During my optic neuritis days, my neurologist had me on weekly b12 injections on top of the chemo and steroids just in case they could help a little with remyelination. I went off them about a year ago. I don't really mind taking b12 if needed, but would definitely mind the injections again seeing as they induced a horrible, unbelievable case of acne last time that just would not go away no matter what I did. The acne vanished about a week after I went off the shots... Would it be possible to take oral b12? Would that make a difference though acne-wise?

Vitamin d was 21.4 and the lab's range is 11.0 to 43 ng/ml!

Re the celiac test results my rheumatologist has the GI biopsy results, but they did come up negative, and as for the blood tests the antigliadin antibodies came up negative with a value of 4.5 and for that lab a positive was any value over 5. My ana results were 1/160 with a homogenous pattern of immunofluorence at the time, they turned negative a few weeks later and resurfaced a year and a half ago with a value of 1/2560 (alongside other autoantibodies related to the clotting syndrome I have) during a major thrombotic storm.

Thanks again for the info! :)

Ziggy

This thread explains B12 and the differences between oral and injectable, and also between TYPES of B12 and dosing:

http://neurotalk.psychcentral.com/thread85103.html

Aha! That's a very informative thread indeed!! Things are a bit clearer now! Thank you MrsD. :)

Ziggy

Hi. Good job for taking th initiative to be healthier in ways you can. I am trying to do that as well. For me I either had a junk food diet or anorexia diet so I am also trying to be healthy all around with hopes of it helping my pain and healing. I am thinking though it takes time and though 3 months is awesome it may be slow changes but in the long run you will see a difference.Mrs D stated the magnesium and I take that as a supplement and have read it helps many. I do have a ? on the potassium and vitamin e I heard these you can overdo in supp is that true? What is a safe amount to take and is vitamin e a good supp to take? That is something I may be low in but potassium I eat cantalope and other fruits/veggies with it. I started eating cantalope because it has more then a banana who would of thought it. The only thing I could add and I don't know your actual diet but also to include healthy fats so you can absorb the nutrients and also it aids inflammation and can help I would think the skin.

Hey everyone,

I've been lurking on the forums ever since I registered but haven't really posted since I started this thread.

However I now find myself in the midst of a vitamin related problem and wanted to ask your opinion and advice. Basically about a month ago I started feeling very tired, with pretty bad muscle pains and muscle cramps. I went to the doc and he did a cbc and checked my potassium levels and lo and behold I was anemic and with a potassium level of 1.7 (the range being 3.5-5.0). My potassium supplementation was increased and more tests were ran to check if the anemia was iron deficient or not, which it wasn't. Now, the muscle pain and cramps stopped with the extra potassium but the docs ran pretty extensive tests to check for other vitamin levels and it turns out my b6, b12, b9 levels are incredibly low, my vitamin d levels have crashed to a mere 5 (with a range of 50-80), my homocysteine levels are at 30 (with normal levels being below 10), my magnesium levels are low, but calcium levels are pretty high (at 20 with normal levels being anything below 9). Also my albumin/globulin ratio is elevated, my tsh is at 3.9 but my free t3 is elevated and my free t4 is normal (so really what in God's name is my thyroid doing...!!!), my cholesterol is very low and I'm still mildly neutropenic.

I realise that's a lot of information and thank for bearing with me so far!

My docs basically said that there's a chance I'm not absorbing nutrients and wanted to admit me to hospital for yet another series of endoscopies (I'm still undecided about that) but in the meantime they want me to increase my b12, b9, b6 supplement dose so we can bring the homocysteine levels down, they've started me on vitamin d pills and a magnesium supplement. However they really don't know what to make of the thyroid tests and don't really have a long term "plan of action" vitamin wise if my endoscopies are ok yet again. I generally follow a pretty healthy diet and though I don't really eat meat (other than chicken once in a while) I do eat fish and cheese.

Basically I'm wondering if there's anyone here with similar vitamin deficiencies and/or anyone with any ideas on what to do about all this?

Hope you're all doing well!

Ziggy

I have one major suggestion about poor absorption:

The scoping is to see if you have frank damage to the lining of the stomach and intestines. But it will NOT show gluten intolerance per se. The blood tests for this would be better and more revealing. There is also a stool test by Enterolab that can reveal intolerance.

http://neurotalk.psychcentral.com/thread115630.html
and
http://neurotalk.psychcentral.com/thread115919.html

jccgf has a website called The Gluten File:
http://sites.google.com/site/jccglutenfree/

This can be helpful too.

Don't hesitate to post on that forum here and ask further questions.

I would also recommend the activated forms of B6, B12 and folate if you can get them where you are.
Methylcobalamin
Methylfolate
P5P (for B6)

iherb.com does ship to some European countries.

Some people have genetic failures in converting the vitamins in pills to the active forms in the body. The RX vitamin Metanx has all 3 active forms, but I don't know if you have it where you are.
Some doctors don't know about "activated" vitamins, and assume all pills are used equally by everyone, and that is not true.

Your calcium may be high due to the low magnesium and low D possibility. You need a test for D.
The calcium may become normal after you get things balanced.
Magnesium is needed to get calcium into the bones. If you are low the bones are giving up calcium to the blood to help run the heart and nervous system. Vit D enables absorption from supplements and food. Low D means poor absorption, so the bones get robbed.

That homocysteine is dangerous... it can lead to stroke or heart attack. So your focus should be on that first, and Vit D levels.

Mrs D,

Thank yo so much for your reply!!!

The iherbs website is really very cool and with incredibly reasonable prices!!

I do take methylcobalamin, but I didn't know there were activated forms for b6 and folic acid too! I have been taking health aid's b6 and solgar's folacin and I think they're just pyridoxine and folic acid vs the activated forms of the stuff... I'm in the UK at the moment so I don't think Metanx is an option but I ordered methylfolate and solgar's p5p from iherbs today so that will hopefully help!

What you said about the calcium and vitamin d/magnesium connection is incredibly interesting! My vitamin d level was 5, with the normal range being 50-80 for the lab. The doc I saw said it's a pretty low level and that I should take 2000 IUs per day in tablet form for a while. He didn't tell me which ones to get brand-wise but the pharmacist suggested vitabiotics D3 tablets; so I hope they're ok... If that, combined with the low magnesium, is causing the high calcium it would be absolutely fantastic as it's fixable at least! Thank you for explaining the different tests for celiac and for the links; will need to look at them in detail pretty soon!

Ziggy

Hi, Ziggy...

I think the Vit D liquigels D3 5000 units would be better for you.

The rate of improvement for D blood levels is 1000IU gives about 10ng/ elevation. At 2000IU you won't get near normal.

The liquigels I think are absorbed better.
iherb has NOW brand very inexpensively.

Keep an eye on the calcium levels... Taking D you should be tested for the calcium every 3 months or so.
Some people get hypercalcemia when on D for a long time, and since you don't know what is really causing yours, just keep an eye on it.

Hi everyone,

When I last posted here a couple of months ago, I mentioned my vitamin d levels were very low (at 5 with a normal range of 50-80), I had slightly elevated calcium levels, low b12, b6, b9 and elevated homocysteine. After talking with my docs (and being informed about activated forms of b6 and b9 here!!) I began taking daily vitamin d capsules at 5000 iu and daily b12, b6, b9 tablets (the activated form) in hopes of increasing my vitamin d levels and lowering the homocysteine ones. Well my b12 levels have increased ever so slightly (still below normal though) but unfortunately my homocysteine does not seem to want to respond to the b6, b9, b12 and has increased even more these last few months... The vitamin d is even lower than it was three months ago (at 2 now which is rather mad with all the capsules I’ve taken....), my calcium levels have gone up and now my phosphorus levels have gone up too. The docs seem to think this indicates hyperparathyroidism secondary to the low vitamin d.

To top this off my ferritin levels have crashed, my red blood cells, white blood cells and platelets are down and I’m feeling rather exhausted... The doctor’s plan this time is basically as follows: Epoetin alpha injections to get the red blood cells and haemoglobin levels up, neupogen shots for the white blood cells, interferon to maybe help calm down the misguided immune system that they think is causing all this trouble, oral ferrous fumarate supplements for the iron and if I don’t respond to that iv iron dextran again and injectable vitamin d (I think the shot is called Calcijex though I may be spelling it wrong) to the tune of 600,000 iu to help replenish vitamin d stores. On top of all this they’ve also put me back on heparin as they’re worried the homocysteine elevation combined with my clotting tendencies/history can’t lead anywhere good...

My reasons for posting here at this point are two-fold. One I wanted to ask a question I can’t seem to get a satisfactory response from my doctors about re the vitamin d injections; I read (online but still...) that injectable vitamin d should not be given to people with hypercalcemia (like I have now, granted probably because of low vitamin d but...). Now my docs seem to think that because the hypercalcemia and hyperphosphatemia are due to the low vitamin d, that they will correct themselves when vitamin d stores are replenished but I still wanted to ask if anyone here with low vitamin d (and maybe even with high calcium and/or phosphorus levels?) has had vitamin d injections? And if so, how did it go? And two I wanted to ask if anyone has any idea and/or experience with homocysteine levels that just won’t respond to b6, b9, b12 daily supplementation (the activated forms)?

Thank you for reading this! Hope you're all doing well!

Ziggy

did you f/u on the celiac angle?? going gluten free is sounding better and better.....http://www.ncbi.nlm.nih.gov/pubmed/18569985

Puzzling:

What doses of the vitamins were you taking? And how were you taking them?

It sounds like you have an absorption problem.

This is the injection information:
http://www.medicinenet.com/calcitrio...le/article.htm

When Vit D is so low, you cannot absorb calcium from food. The parathyroid then sends out signals to rob your bones of calcium and this sometimes overshoots and raises calcium in the blood temporarily. This is probably what your doctors are thinking.

You may need megadoses of P5P, methylfolate and methylcobalamin. If there is serious inflammation of the small intestine, absorption will be blunted for everything you consume. You may have to get your Bs by injection too.

Have you had your kidneys tested? Elevated phosphate sometimes signals kidney trouble.

Pabb and Mrs D, thank you so much for replying to my long and rather strange post!

I have been tested for celiac, blood tests and GI biopsies, in 2007, and everything was negative. My docs are considering the possibility of re-testing though given the present circumstances...

Mrs D , thank you for the vitamin d explanation (and the injection link!); I think I hadn’t understood exactly how vitamin d interacted with calcium. I think I got it now though!

Re the vitamins:

I take vitamin D3 softgels to the tune of 5000 IU per day

Methycobalamin (2000 μg per day) with 50 mg b6 (the activated kind, p-5-p) and 800 mcg folic acid (the activated kind again l-methylfolate-metafolin); I don’t eat or drink anything an hour before I take the b vitamins and a couple of hours after as I was told that can hinder absorption of b vitamins.

I also take evening primrose oil and omega three fish oils as my essential fatty acid levels were practically nil upon testing and spironolactone for the hypokalemia. The iron supplements I’ll start taking this week.

My kidneys are ok, leaking protein and blood, but urea and creatinine are fine; the only slightly strange thing being that the urea level is well below normal but I was told that might have something to do with decreased protein levels in the blood (and they were also very low on testing) rather than kidney function.

Would the megadoses of P5P, methylfolate and methylcobalamin you mentioned be higher than what I’m taking now? Yes, injections have been discussed but they would have to be Neurobion injections and they have cyanocobalamin vs methylcobalamin (and if I had to guess I’d say they probably don’t have the activated form of b6 either) so I don’t know if that would be wise....

Ziggy

Gosh, I have no idea how kidneys can be fine when you are losing protein and red blood cells! Infection, inflammation and nephrotic syndrome all cause that.

I don't think there is anything further I can suggest. Your situation is confusing and something is wrong somewhere.

You'll have to rely on your doctors to find out why you are not responding to oral vitamin supplements. I hope they figure this out quickly, for you too!

If you are not absorbing D, and B's you are probably not absorbing other things too.

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:D

Hellooo again and Happy New Year!!!! :catalan2:

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! :rolleyes:

Thanks so much for the reply and for the information! :)

Ziggy

Response to anti-inflammatory drugs like ibuprofen suggest and inflammatory cause.

As circumstance would have it, I am getting ready for a CAT scan soon, for my left neck nodes, which are getting large and are painless... the ultrasound I had recently suggested further evaluation.

This is making me nervous. Those do not change with anti-inflammatory drugs either.

Mrs D,

Thank you for replying!

I had suspicious nodes on a thyroid ultrasound in 2007, followed by a biopsy; and a very suspicious shadow on the right lobe of my liver on ultrasound and ultrasound with contrast that required a a CAT scan and a bunch of experts for further investigation. The thyroid turned out to be thyroiditis with harmless nodes and the shadow on the right lobe of the liver is a relatively big hemangioma, but the further investigation aspect of both was absolutely nerve-wracking to say the least...

I hope the CAT scan and results go as well as they possibly can! I, for one, will be keeping my fingers, toes, hands, arms and eyes crossed for the best possible result for you! :)

Ziggy

Thought I'd update on the lymph node swelling situation! I was quick to "accuse" the fish oils when the problem started as they were the only thing that had been added to my diet/supplement list right before the cervical lymphadenopathy appeared. I stopped the EPA capsules, took the zithromax my doc prescribed and the swelling got worse and spread to the left side of the neck, both armpits and over and under both clavicles. I went through a check-up for infections once more and came up empty and was even sent to a lady for Manual lymphatic drainage at one point just in case the swelling was idiopathic lymphedema. When she saw me she sent me right back to my doctor saying she wouldn't touch me until everything else had been ruled out as she didn't think I had idiopathic lymphedema at all.

Oddly enough other things started going a little wrong during this whole episode. I had really high fever, joint pain, my ESR sky-rocketed while C3 levels crashed and I started getting really bad and worsening reactions to SCIG. To cut a very long story short suffice it to say I was diagnosed with serum sickness from the immunoglobulins I'm on (after we reported my symptoms to Baxter, checked the batch was ok and no other people had had problems from it etc etc).

It's been a trying month as we've attempted to get to the bottom of what's going on and more recently how to fix it, but if nothing else it's absolutely brilliant to know what's going on! :rolleyes:

I still have a biopsy scheduled for mid-April just to be on the safe side (if this hasn't subsided till then) re any possibility of lymphoma or obscure infections playing hide and seek, but that's just a "better safe than sorry" thing more than anything else!

So...the EPA capsules were innocent in this! IVIG and dysfuctional immune systems are the culprits!

Hope everyone is doing well! :)

Ziggy

Thanks for the update, Ziggy. I hope it all works out for you.

Seems like you have been thru alot! :hug:

wow, thanks for all of the great info, I think I will look over my celiacs test results again too!

Thanks for the reply Mrs. D and for your kind words! It was kind of a lot yes, but it's always better to know than not to know so at least we can relax a little now seeing as we finally got to the bottom of it...!

Ziggy