[cyclelops]

I am wondering if any of you have had T cell counts done. I just had one done, and it shows very high T helper cells and low suppressor cells and a ratio of 5.92. The diseases that seem to come up with this are sarcoidosis, lymphomas and scleroderma (doubtful for me.) Any ideas on this whole thing.

Perhaps the Lyme did a dance on my immune system>>>sarcoidosis?

[cyclelops]

These labs are consistent with sarcoidosis, neurosarcoidosis. I just have to wait to talk further with the doc. Great, more waiting. You know, I brought this concept up years ago and got pooh-poohed. Oh well, it is good to know my symptoms are not anxiety.

[dahlek]

I do believe I had that tested twice, once for my CIDP diagnosis and a second time for my cancer. But little, if anything was made of it or about it. Mostly they looked at the IGa and IGg and subclasses....
You bringing up this issue is a good kick to my backside to take another look...as I am sure nothing was ever mentioned about the two being connected...except by my specialist surgeon. Go figger. But then she'd worked at NIH? The assurances were that it was highly unlikely and not related {HAH!} We know better about ourselves at times and I, too, have been pooh-poohed about other connections to that pesky thyroid issue as well. You are not alone?
Hang in there, maybe some doc will get a lightbulb moment? One can always hope.
's - j

[echoes long ago]

Little is known about sarcoidosis that affects other organs besides sarcoidosis that affects the lungs. It is turning up among rescue workers and victims who were at the world trade center and the effectiveness of treatments varies with the individual.

[cyclelops]

What I had tested were my CD4 and CD8 cells and other things with CD in front of them....(over my head immunology stuff). This did not have any Ig stuff....just T helpers and T suppressors....and ratios.

Actually quite a bit is known about sarcoidosis and neurosarcoidosis. They have several pretty good sites. What causes it is a mystery, as is the case with most autoimmune disease. I know my ratio is above 4, and that apparently is what they say is indicative of this disease....of course, I have so many systemic symptoms I don't even want to begin to rattle them off. (Bores folks) Often confused with Sjogren's Syndrome, shares a great deal of symptomotology. Given my seronegative Sjogren's diagnosis...hmm??? My mom just had a lung CT with a 'fungus' of unknown duration 'diagnosed'.

Two thirds get acute cases and one third chronic. Seems genetic, but environmentally triggered. Highest in southeastern US African Americans, then next come the Swedes and Irish. Thought to be vastly underdiagnosed in the US, in my opinion, this is because we become 'American' and lose our ethnicity, which is like losing identity medically speaking. Not enough consideration is given to 'ethnic' heritage.

My recent oncholysis kind of booted up the search. That only happens with a few systemic diseases. It narrowed things down a lot. That with my grossly lymphocytic labial salivary gland biopsy, apical lung changes, cardiac changes, arrhythmia, blah, blah, blah....hate to even go thru it all.

Ah, well, I am sure I will get some more 'work' done soon, and know more. An angiotensin converting enzyme test is needed next.

I was just wondering if any one else had T cell counts done and if they reflected a 'high ratio'.

I had not totally ruled this out as a possibility, just thought my blood was in general, 'normal' or 'seronegative'....well, it is normal, until some abnormal test comes in. It certainly reflects something autoimmune is going on. Goes to show you, clues can lurk anywhere.

[cyclelops]

I am going in for a few additional tests and scans. Elevated T helper cells, with low suppressor cells occur in very few diseases. Neurosarcoidosis is one of them. There is plenty of info on the net regarding neurosarcoidosis, which does manifest as peripheral neuropathy. To be honest, this disease was not one that I seriously considered.....it crossed my mind, but, I blew it off. I guess I did not know enough about it.

Pulmonary sarc gets the most press. (I do have pulmonary changes on CT). However, neurosarc is out there, underdiagnosed, and should be one of those diseases ruled out right away.

For me, PN was never the only issue, so there was a higher level of suspicion that a systemic disease was involved.

Add to this a physician diagnosed case of Lyme, caught while acute but likely not treated well enough, and neurosarcoidosis is not such a long shot after all.

If you are sick with more than PN, you can get two simple blood tests, a T cell panel and an ACE, angiotensin converting enzyme test. T cell ratio is always high or elevated in Sarcoidosis, neurosarc or non-neuro. (Most neurosarc is also systemic sarc-but not always.)

This will be an interesting month.

[echoes long ago]

what are the treatments for neurosarcoidosis? steroids? i will pass this info on. I have only been hearing about pulmonary sarcoidosis and sarcoidosis of the eyes or other organs, not systemic. Then again there are vested interests in play that dont want connections found. I know that sounds like a conspiracy theory but its more of a liability evasion. Cortico steroids and prednisolone has not been effective in the cases i know of that are other than pulmonary. I hope everything works out for you. A definite answer would be a relief for you finally i can imagine.

Apparantly the alheimer drug aricept is being tried for those who dont respond to cortico steroids.

[mrsD]

being used by "some" is the Marshall Protocol.

They use ARBs which are angiotensin receptor blockers.
(example= Benicar)

We can't put up some links to forums, but if you Google the Protocol you'll find it.

I did a search once on Benicar for a bipolar patient (who claimed to have CNS side effects from it). I could not find that it appreciably crosses the blood brain barrier. So I don't know if it would be an option for neurosarcoidosis.

The Marshall Protocol claims that Vit D makes this condition worse. But they are very
controversial and not mainstream, so I cannot comment on how accurate it is. But I do know they test for it and withhold vitamins with Vit D in them.

This is the Wiki link to Trevor Marshall:
http://en.wikipedia.org/wiki/Trevor_Marshall

[cyclelops]

Thanks MrsD. I will know more in the next few weeks. Given the downside of the TNF drugs and steroids, I would consider the Marshall Protocol. I will wait to see how bad things are, and if indeed this is it. While at Hopkins I asked about running my T cells and was told, any abnormality would show in my general white cell count....wrong!

It is hard to accept if it is neurosarc that it did not get triggered by the Lyme. Seems like you need genetic susceptibility and then a trigger.

Have you read much about the vitamin D link here? If I have this, it is devastating to me.....sunshine makes this worse according to the Marshall Protocol. Plus, vitamin D, which I thought would be good for me, could conceivably be bad. What a mess! This has to be the only disease that does worse with Vit. D. And I love dairy. Perhaps I need to keep a goat. I will need some kind of vitamin advice for sure.

I don't think they know how to 'treat' this, let alone cure this, so I will look at all options and see which one makes sense.

I am tending to lean toward this being 'it', as so many symptoms match and now the T cells. I am concerned about the cross over to Sjogren's. There is a lot of dual diagnosis....or people with seronegative Sicca syndromes that may have this and not get found, because docs don't run T cell panels. I don't know what made me ask for it....something just kept bugging me to ask.

Well, I will know more later. Thanks for the advice and support.

You know, you search and search when you are told it is 'idiopathic' and then when the answers finally do start rolling in, you almost wish you were idiopathic again.

I don't want to put the cart before the horse....so, I will have to wait until all the tests are run, but, at least I know this is a T cell related autoimmune thing.

[dahlek]

I'd go with that 'instinct' and gut feeling, personally.... Dunno tho this is a bit more outta my range than normal.

Have to ask one big hard question tho.... Would the tests if positive, result in any postive viable treatments? Or, merely more formally assert more of the same therapies and meds that you are getting now....

THAT is one of the harder things I've had to accept with my own med issues, that of knowing there isn't much more that they can 'DO' for me beyond what they're doing. Beyond that, there is a round of diminishing returns and so forth. Not to mention some anger about the whole thing, but that's another topic I think.

Hugs and hope for sure! - 's - j