How Do You Find A Creative, Intelligent Immunologist?

[davecom]

I noticed that a bunch of you are followed by an immunologist. I think that maybe my next step in the NY area. What I'm afraid of doing, as has been my experience with some specialists in the past, is going to a mediocre one and/or one that has no idea about what we're dealing with. I've looked through all the immunologists' sub-specialities at Cornell and Columbia and nothing caught my eye.

I'm at the point where I have confirmation that my underlying sub-type of POTS is neuropathic(small fiber neuropathy). My neurologist suspects it was post viral and expects me to recover on my own now that some of the more glaring auto-immune diseases have been ruled out by blood test (lupus, scleroderma, sjogren's, etc - although I know sometimes these still exist even when initial blood tests are negative). He expects me to recover over the next couple of years and doesn't want to run any more tests or put me on immune suppressants unless I get worse. Well, yes, I am a little better than 3 months ago - but as he said it's not really clear how much of that is actual disease improvement and how much is my aggressive exercise program. Despite exercise biking 7 miles 5 days a week, weight lifting the other two and walking 100 minutes a day, I am still miserable; in bizarre pains, unpleasant chest and neck feelings/pains, gastro issues, and with an erratic up and down heart rate while upright.

So basically I want to be sure I don't have an ongoing immune thing that continues to destroy my small fiber nerves. It would also give me piece of mind to find some anti-bodies and be able to have an explanation like... "oh yeah you had mono/some bizarre herpes/etc last year that caused this."

So how do I go about finding a dedicated, intelligent, qualified immunologist who will be willing to work with me? I don't even know what sub-speciality of immunology to look for!

[jpjd59]

I would look for a doctor that specializes in immunology and infectious diseases. They are hard to find but seem to have a better picture of the post-viral issues.

[arizona girl]

I have some recommendations, but what makes you suspect your immune system? Are you getting infections or feel like you have a fever without registering one?

Immunologists fall into two categories. The largest group are mainly allergists, the second much smaller group treat defective immune systems, http://primaryimmune.org, is probably the best online resource for these deficiencies. I believe they have a link to physician referrals.

The immunologist doing the most research in this area is Charlotte Cunningham Rundles. She has produced a lot of research on the subject. One of her abstracts discusses the association between primary immune disease and companion autoimmune disease. I believe in that article she also mentions that autoantibodies don't always present making it difficult to diagnosis an autoimmune disease. I would say that can be true, as I myself fit into that profile. CVID, autoimmunity and small fiber autonomic neuropathy.

It also can be true that someone younger who gets dysautonomia, is able to recover, with the treatment plan you've mentioned. I don't know though if that would include someone who has documented SFN.

She is located in the new york area I think at Mt. Sinai. She is easily googled though.

[davecom]

Thanks for the suggestions! I looked up Dr. Cunningham-Rundles and I may try to make an appointment Monday (I imagine there's quite a wait). I'm not sure immune deficiency is really the avenue I'm looking to explore, but maybe I just don't understand it properly.

Well my neuro flat out told me based on my test results that my immune system destroyed my small fiber nerves. He thinks it is probably post-viral, and wants to take a wait and see approach before doing more testing since auto-immune blood tests were negative. Me not so much. He is co-director of the neuropathy clinic here and was very adamant that small fiber nerves can regenerate when there is no underlying auto-immune disorder (and even if there is given immuno-supressant drugs he said). He said my outlook was pretty positive since I have shown some signs of recovery already in his mind. I really want to believe that, but I'm not so sure since I'm still substantially disabled.

I don't really think I have a defective immune system. I think the neuro is right and I had some kind of immune response that triggered the sudden destruction of my small fiber nerves. I want to know what that immune response is/was (auto-immune, virus, etc).

[arizona girl]

That sound right what your neuro said. You could have had a one time viral attack that damaged the nerves. My neuro also told me that sfn will regenerate, if the offending attacking agents are controlled or like in g barre if the assault can be stopped the patient will recover. Maybe that is why he is wanting to wait, if it was a one time viral like attack, it would not be ongoing and you should recover. Did you have have viral attack prior to symptoms starting or can you look back on your life and see you've had signs of something wrong back into childhood? If it was a one time attack you will have a very hard time trying to figure out what that assault was.

If you don't have a history on infections, any type of infections not just respiratory, your immune system is probably okay. A total quantitative immunoglobulin and sub igg panel can quickly check that. If any of those are low then an autoimmune disease autobodies might not show up.

It would really depend on your symptoms and which ones are causing you disability to point you to what autoimmune disease or other illness you might have.

[Chaos]

You might also check into immunologists who specialize in viral diseases. The ones I'm familiar with happen to be ones who also specialize in CFS as they are looking at viruses as a cause of ME/CFS. A couple who come to mind are Dr. Enlander at Mt Sinai, Dr. Ben Natelson at Beth Israel (actually I think he's a neurologist but also looking at viral causes for ME/CFS), or can't think of the woman's name right now in NYC but also a specialist in ME/CFS. I know of them only by reputation but not by any kind of personal experience. They might at least be willing to run the viral panels and sub IGG panel, and Natural Killer Cell Function assays that might show if this is a cause of your symptoms. There is also a doc in Michigan, Dr. A Martin Lerner who has a lot of experience with this whole issue as he had the disease and treated himself with anti-virals with good success.

I fly to San Francisco to see the doc/immunologist who I'm working with currently, so they are few and far between, in my experience.

While I was diagnosed with POTS first and keep that as my primary diagnosis, I went down the ME/CFS path just to see if there was anything to be learned about a possible virus link. I've learned a ton and seem to be having some good results with some of that treatment. Still meet POTS criteria but am a lot more functional and feeling better.

[davecom]

Thanks for the replies and suggestions guys. These were some of the most helpful replies I've gotten on this forum. Really appreciated.

Yeah no symptoms going back to childhood, or even back beyond a year ago - was definitely a fairly sudden thing. Only really bothersome definite infections I can think of were a very bad sinus infection once that lasted for months (but I have overall structural sinus issues/previously had nose bleed issues so that was no surprise), horrible food poisoning preceding this by probably too long a time - 8 months, a recurrent/hard to eliminate staph infection (lasted like a year) on my legs, and acne. Very rarely got sick actually in terms of colds/other infecitons, etc. It's funny I took a bunch of classes in computational biology and genetics for my masters and studied so many viral models. Now I wish I had continued on to work in it so I could fix myself!

Enlander seems to have his own clinic now. Looks like it might not quite be what I'm looking for. I will keep him in mind though - I'm checking out the others too.

I had a mostly normal basic IGG (think they only did 1 through 3) panel before except for one slightly high value (don't have it with me atm) and an elevated CH50. I really want to get a ton of viral antibody tests. I know a bunch may still be floating around in you a year later; I'd love to have a positive mono (ebv right?) for example and have an explanation; or alternatively of course I want to know if I have sjogren's, sarcoidosis (the two I think most likely) or some other autoimmune and get onto treatment asap.

The thing is I can't really be sure I had a viral attack. It is suspected since I suddenly had extreme digestive issues after never having them before (that have continued but gotten slightly better). I also had a lowered LVEF on two echos at the time, that has since returned to normal. For those reasons they suspect maybe post-viral. Yet, I never had obvious signs (fever, very elevated white blood cells, etc). I also have such continued systemic involvement - skin changes, digestive, neurological, cardiological, etc that I doubt it in some ways and think the autoimmune issues being suddenly triggered by an instigator is more likely in some ways (trauma, etc).

Natural Killer Cell Function sounds interesting, but I feel like I wouldn't have been so healthy before if I had issues there - definitely worth doing though. Of course in my opinion... and this is probably a lot of us... almost everything is worth doing! Why society spends millions on octogenarians in the last 2 weeks of life, but is more reluctant to spend tons giving back someone in their 20s their life by figuring out definitively what's wrong is something I won't ever understand!

[dkd]

The problem with antibody tests is that they can be positive for IgG if you've ever had the illness in your life.

You could have had mono as a teenager and your test would probably still be positive showing that you have immunity.

If you had a high IgM titer, it would indicate a current infection, but you said you don't recall any recent infections.

[arizona girl]

Hi dkd, There are a lot of disease specific igg tests and your right about them staying positive after exposure and needing an igm for active disease.

We are talking about a different test. It is the master test to see if the immune system is working and is call a "total quantitative immunogloblin" it consists of a non disease specific IGG, IGA, and IGM, a sub igg panel, IGE and IGD are usually added, if anything is off with these a vaccine challenge test is order to see if your immune system can mount any kind of response to an antigen. So this is more of a global test vs looking for a specific disease like lupus.

Hope that explains it better.

[davecom]

Well I think in my case it would be assumed that since it is thought I had a virus last year and I had no history of anything particularly interesting before that virally, it would be the virus of last year... although of course some people have mono, etc as a teenager and don't even realize it.

[arizona girl]

Dave, did they do a total quant on you not just the sub igg? One of the sub igg being high, along with ch50 with a history of a staff infection sinus infections not clearing quickly with treatment can point to something off with the immune system. Infection or inflammation can cause it to be high from what I just read.

BTW it is very common that if the immune system is defective that the body is unable to produce and effective fever when there is an infection on board. In my case my IGA was still intact so I didn't present with respiratory infections, I did however have a long history of other fungal and viral infections and had all the childhood disease more then once.

My neuro checked me for sarcoid, thankfully it was negative. I also had the lip biopsy for sjogrens, my infiltrates weren't high enough to prove it yet. I was diagnosed with Undefined Connective Tissue Disease UCTD, based on my mixed labs, scalp biopsy that showed signs of lupus and sjogrens. There was enough to show some autoimmunity, along with hashimoto. Those autoimmunes along with lichen and autoimmune thromobosis are sometimes found with immune deficiency, according to Rundles.

Have you had a hemotology workup yet?

[davecom]

Yeah the total igg was normal. Yes, my PCP told me high ch50 was a non-specific indicator of inflammation and likely due to my aggressive exercise program. Personally, I would rather have Sarcoid than severe Sjogren's (I think, but what an awful choice) since in many cases it resolves itself. I have not seen a Hematologist.

I never had recurrent viral infections (just the aforementioned bacterial that took a while to go away), and in prior illnesses always developed a normal fever. Clearly there's something off; I don't think I have any idea what it is; I hope it resolves itself - but I clearly need to find a good immunologist to be sure. I'm a bit scared of choosing the wrong guy/lady for the job. I have found it can actually be more harmful to go to a bad/wrong doctor than it is helpful to go to a mediocre one. So, I really want to be sure I'm going to a solid investigator who's interests fit my problem well. Still not sure who that is exactly; but will keep looking.

[Guest Hanice]

Hurray for the possibility of overcoming this monster!!!! I would be ecstatic to hear that from my doctor! I am VERY happy for you davecom. :-D

[Chaos]

In my experience, the doc was checking my IgG as well as IgM levels for the various viruses he was looking for with his testing. For Epstein-Barr, they were also checking nuclear antigen and early antigen IgG levels. The immunologist was telling me that they are finding that a certain percentage of us seem to run chronically high titer levels (that's the IgG) which they think indicates that we aren't fighting off the viruses normally. Usually, he said, people have a spike when they first get sick and then over time, the IgG levels diminish. But, some of us run chronically high levels of those titers. They seem to think that indicates the immune system isn't suppressing the virus appropriately and that there are recurrent partial reactivations intermittently- perhaps explaining the "flares" that many of us experience??

The natural killer cell function ASSAY test is the one you would want to get ordered I believe. There is a component of natural killer cell function in the IGG subpanel tests but those don't give you the same info that this test will give you. NK cells are the ones that patrol for viruses and mutating cells (aka potentially cancerous cells) in the body. So, if your NK cell function is low, it would make sense that we run high viral loads potentially. Unfortunately, at this time there is nothing that will increase NK cell function more than a little bit so my doc is trying to treat by using anti-virals to decrease the viral load and hoping that the immune system will then start to repair itself.

Have you looked into "leaky gut" at all? It's actually pretty interesting how many people have had some form of major GI issue (like you had) which preceded the onset of their symptoms by months or years, or have co-morbid IBS type issues. There is another doc in Belgium (Kenneth DeMeleir (sp?) ) who says there is no such thing as ME/CFS but it's a bunch of different diseases caused by different pathogens, all instigated by disease of the gut which allows them access into the rest of the systems in the body.

Getting back to the viruses, there are some written recommendations from Dr. Lerner that he has for practitioners where he says what he uses to treat the various viral levels and at what IgG or IgM titer levels he thinks it's significant enough to treat at. He's been doing it long enough to have some pretty good data. If you can't find them on google, let me know and I'll try to find them again. Stanford also has had some pretty good studies. They are supposed to be publishing one with 600 subjects pretty soon here. It's all such "cutting edge" research though that you'll be hard pressed to get definite answers from most of these docs as to whether it's the actual virus that is doing the harm, or if it's the immune system's faulty response to the initial viral attack that is propagating the problems.

One other thing in the FWIW dept....is that the blood work for these viruses may not be all that accurate as they are apparently finding the viruses in the nerve tissues, brain, cerebro-spinal fluid, bone marrow etc more than in the blood.

Happy researching!!! Actually the research on all this stuff is fascinating.