I don't know how that happens, but I don't have any either, and yet my lip biopsy was very positive for Sjogren's. It's impressive (if that's the word!) to have so many without antibodies, though. Maybe they only show up when the symptoms are very active or something. I'm curious if anyone else will have a good answer to this.
Yeah I wouldn't worry about "autoantibodies" too much. They mean a lot to doctors because they act as a red flag, but they can come and go, or in some people they never show up. Some people have them, and are perfectly healthy, so it kind of shows that they're not as significant as a person is lead to believe. I have biopsy proven Sarcoidosis, and inflammation all over my body, and I don't have "autoantibodies" either.
The thing that jumps out to me about your problems is pancreatitis, this is somewhat unusual, and may be the road to finding out what is causing your problems. The first thing that would pop into my mind would be a medium sized vessel type of vasculitis. I know thyroid problems and adrenal insufficiency a lot of time comorbidtate (not sure if that's even a word but it sounds cool) in women with "autoimmune disease".
I would see someone in Internal Medicine, that is also an Endocrinologist to sort this out.
Maybe this didn't help at all, but it's all I dare post.
Thank you both very much for your replies! I really appreciate your thoughts and help.
Antibodies are so weird. I have a strong feeling that vasculitis was actually the earliest of my problems to appear 3 years ago or so, even though it may be the last one (hopefully) to be diagnosed...this whole journey has been a complete nightmare, to be honest.
My internist, cardiologist, and endocrinologist all think I have Churg-Strauss vasculitis. I think I probably also have some underlying temporal arteritis/PMR as well (I know they say it doesn't happen to people younger than 50, but whatever). At this point, I really don't care what the label is, I just want to feel better.
My endo says I may need to taper down on my steroids (been on a dose 4-5x higher than what's normally required for Addison's for the last 4 months) enough to become heavily symptomatic again, just for the sake of an artery biopsy. I had a skin biopsy several months ago that showed high eosinophils - red flag for Churg-Strauss, but no one put it together with my other symptoms/labs. I almost died a few times last year and just can't go through that again. Right now I'm barely hanging on, and when everything "flares", it's really terrifying.
Corvin, sarcoidosis is something that was mentioned to me a few times, but I never had a biopsy for it - only blood testing. May I ask what part of your body was used for biopsy? Lung? The weird thing about Churg-Strauss is that one of the "hallmarks" is adult-onset asthma (with lung infiltrates on x-ray)...I do not have this. I do have what I would call "allergy attacks" now, which are new, and just recently developed allergies to more than 40 foods. I haven't been tested for environmental allergens yet, but something creepy happens every time I go outside, like my whole body is being squeezed, joint pain, sweats, rashes, neuropathy in my extremities, vision changes. Very unpleasant.
Anyway, sorry to blabber on. Thanks again for your insight. Hope both of you are doing well...take care.
To diagnose me they snatched four little pieces of bronchial wall tissue from inside my lungs, through bronchoscopy. Well actually they wanted to first snatch one of my hilar lymph nodes in my chest that were enlarged, but they found that the only way to snatch one would be to totally crack me open so they opted for the bronch scope biopsies instead. But yeah your right it doesn't probably matter the name you give it because all of the inflammatory granulomatous diseases are treated basically the same, the dose of immmune suppressants just varies depending on how much organ involvement there is.
Biopsies are the only reliable test, but the only other test sort of unique to Sarcoid is a serum ACE test, that's probably what they checked in you when they were considering it. But just like ANCA antibodies aren't a slam dunk for Churg or Wegener's, ACE isn't always high in Sarcoidosis either especially if you try to check it during a remission period or when the patient is on steroids.
Do you have heart involvement, and that's what almost took your life a few times? Your heart went into an uncontrolled arrhythmia, and they had to shock it back again? Or maybe you just meant you felt like you were on your death bed not that you literally almost died.
I just pray you can get this all sorted out, and under control, and you can "babble" all you need to.....I know I do all the time :-)
Hi again Corvin,
Thanks a bunch for your note! Glad to have this info. It was an ACE level they checked on me, like you said. I've had lesions show up on CTs/MRIs of my spleen and liver at times, which were thought to be either hemangiomas or granulomas, but they came and went...I had adhesions all over my colon (sorry) that were found during a pelvic laparoscopy a year ago, and their presence was sort of a mystery...no endometriosis or anything. Who knows.
Without going in to too much detail, what I meant in my last post was that I had several full-blown Addison's crises with "the works" over the past year or so...don't have much memory of those, actually. Then acute pancreatitis a few times and episodes of severe hypocalcemia with all of the related complications, and some other really bad memories/events that I'll leave out of this for now if that's o.k. All of my new doctors have told me (in retrospect) that I'm "lucky to be alive"...I haven't truly reflected on it all yet, but will probably always wonder why in the world I'm still around...my acupuncturist says I have good chi... :)
All of this was undiagnosed for so long - went to hospital after hospital, discharged with "idiopathic" symptoms and no diagnosis, ended up being told I had "something subclinical" and should see a psychiatrist...it was unreal, like a really bad nightmare, or a really good Kafka novel, haha!
Finally I decided to go to one last hospital, and just demanded the testing for Addison's (I'd done so much reading at that point that I had a pretty good hunch) and was diagnosed. Ironically, it was a psychiatrist who set me up with the endocrinologist who ran the tests! I give thanks for her every night.
Then I requested subsequent testing for the other endocrine stuff, got that nailed down, thought I was good to go...but haven't really improved yet. My docs all thought it was just because I have malabsorption and can't metabolize my meds normally, but that just doesn't click with me (since the only malabsorption I've been diagnosed with is fat, which has to take place in the small bowel, and my meds are absorbed in the stomach...)
So I did some reading about the ideosyncracies in my labs and symptoms (stuff that just doesn't quite fit into the "polyglandular syndrome" diagnosis) and started wondering about vasculitis, took the info to my internist, endo, cardio, who have all suggested Churg Strauss. So I'll see 2 rheumies this week. I'm hopeful - seems like it's only when someone says, "This other doctor thinks that I might have ______." that objective treatment really begins! Or, at least that's the way it seems to me these days, anyway...
But you're absolutely right, so many of these diseases are treated the same way, that I'm sure what I'm doing right now (monster steroid doses) is indirectly treating whatever it is that I "have". I'm just so baffled by all of this...everyone probably feels this way, but a few years ago I was so HEALTHY. Not sure what happened, other than some whopper infections. I guess that's enough to do it though, right? Sometimes I just get so scared that there's something really bad going on here, setting off some weird chain of events...the enlarged thymus freaks me out more than anything, honestly.
Do you take immunosuppressants? I have a feeling I'll need some, since so far I've been unable to taper my steroids at all...
Thanks for letting me babble - boy, this is a long post, sorry. And thanks also for all of this information. I'm really thankful to have found this community. Hope you are well.
Do you take immunosuppressants? I did for two weeks, but I made a personal decision against medical advice to stop them.
I was reading back your past posts and read you have had a few episodes of adrenal crisis. Adrenal crisis, and hypercalcemia, and the hypercalcemia probably induced the adrenal crisis, and the pancreatitis. Then I read you have Vitamin D disregulation, and I just about fell off my chair ! :-) You wouldn't believe how many times this comes up over, and over. Now I'm just wondering if I should open pandoras box or not.....Ah what the heck :-)
This is something you should know about, even if you don't agree with it, it's not right that you at least can't have the information and decide for yourself. But just as a disclaimer this isn't intended to be medical advice, and only your physician can advise you on treating your illness.
Okay were to start.....well to keep it simple, there is a certain type of bacteria that has developed the ability to evade, and suppress the immune system. It does this by losing it's cell wall, invades the very cells that are meant to destroy it (macrophages), and produces ligands that bind to the Vitamin D Receptor (VDR) in order to keep 1,25 dehydroxy D from binding into the sockets of the VDR to activate it. Subsequently it then blocks the gene transcribtion of proteins that are made by the VDR that act as natural antibiotics. In the process the VDR can't regulate the Vitimins D properly, and 1,25 builds up, and 25 D (the kind labs normally check) gets down regulated by the affects of the 1,25 D on another receptor called the PXR, making it seem like the person is Vitamin D deficient. Then conventional knowledge is to think the patient is Vitamin D deficient, and to supplement more Vitamin D which actually just causes more 1.25 D to build up in the body, and makes the patient sicker in the long term. Also the high levels of 1,25 D have negative affects on other receptors in the body, for example the thyroid, and glucocorticoid receptors, which cause their function to become disregulated also if the 1,25 D gets high enough. Also these other receptors produce natural antibiotics also that get blocked in the process as well. Furthermore when 1,25 D reaches a high enough level it leads to hypercalcemia in some patients. So just by the Cell Wall Deficient bacteria developing the ability to block the VDR, and to hide in the very immune cells that are meant to destroy them they are able to slowly perpetuate their presence in their host (homo sapiens).
This is sort of the main basis of the Marshall theory, and once you can understand that part everything else sort of falls into place after that. For example these pathogens don't mind having a little help along the way such as: times of extreme stress, acute viral infections, substance abuse, a society that is Vitamin D supplement crazy, and all the other plethora of chemicals, and toxins that end up in our bodies throughout our life that can divert, distract, or suppress both the innate, and adaptive immune system.
This my current best understanding, I didn't go into it real deep, but if you watch the videos below in succession it's explained in more detail.
WOW - this is really interesting to me, Corvin. I still have to watch the videos, but first had to ask the big question...How is it treated?!
I should have mentioned that what started all of this off was the succession of 4 blood infections. The first was from an infected tattoo (stupid me) - the tattoo artist had a horrible URI and coughed right into my open wound. I still wonder about TB sometimes because of that, actually...I've had the skin test but never the blood test. And then I was bitten by 3 separate stray cats (was working in the veterinary field). All of these infections were treated w/IV anti-b's, but it was in the midst of them that things really started to go awry. So this is why your post about bacteria clicks with me...
Anyway, thanks again. Hope all's well with you.
For the record.... I agree with everything Corvin wrote and I've had success on the Marshall Protocol myself.
The Protocol I'm referring to is called the Marshall Protocol (MP), but there are other treatments available that people are having success with also. But all of them are centered around strengthening the immune system, and using antimicrobials to weaken the bacteria so that the immune system can start to deal with them more affectively, and begin to induce recovery in the patient.
Just to give an overview of the MP, it was designed by Trevor Marshall, who is a biomedical engineer, who in the seventies developed Sarcoidosis himself. Then it wasn't until the nineteen eighties that research was beginning to be done in-silico, which means basically not in the laboratory, but done by molecular modeling, and genomic mapping with computers. Like when I said "Marshall theory", I don't actually mean he just pulled things out of thin air, it is all based on molecular modeling, and mapping of the genomes of microbiota...in-silico. Based on that knowledge he was able to predict the immonopathologic affects of a VDR antagonist, and administering low dose antibiotics in chronically ill patients. Basically when you give chronically ill patients these drugs it induces an immune response that is only explainable by bacterial die off, and if you gave these same drugs to someone who is healthy they wouldn't do much of anything.
But basically through his research over the years he has shown that Vitamin D is not a nutritional vitamin at all, actually your own body makes all the Vitamin D it needs on it's own from 7-dehydrocholesterol, and the body will store some extra that has been synthesized from sunlight, but to continually add Vitamin D in the diet or supplements actually has an adverse affect on the immune system and only aids in the proliferation of chronic infection when there is a form of bacteria that has learned how to block the VDR, and the VDR and other receptors own natural antimicrobial peptides. Next is that it isn't just one species that causes a chronic disease state, it is caused by many different species. His evidence for this is from the magnitude of genetic transcriptual error in the human genome, one single microbe by itself is incapable of creating such a diversity of errors. Finally it is that most all chronic diseases are just syndromes of a common cause, chronic intracellular infection, especially lymphocytes and monocytes, infected with these chronic parasitic bacteria. The way that they are able to evade the immune system, and change the genetic transcription of the host cell DNA in imponderable ways, it is only logical the multitude of disease states they can cause.
On a personal note why I respect Trevor Marshall's work so much is that he has no financial motive for his Protocol...all the information is free on the Internet, he is'nt tying to sell you anything, and I feel why would someone subject themselves to so much scrutiny if the information wasn't backed up by clinical observational data, that is consistent with the computer modeling data. That and it just makes a whole lot of common sense :-)
But anyways, watch the videos if you get a chance, the first, and third ones are long, but if you can watch the entire presentations it's definitely worth it. Again this is just for your own knowledge, I'm not giving you any medical advice, and you should speak to your physician about any treatment you do or don't receive.
I'm doing alright, I've stopped the steroids, and have began cutting out fortified vitamin D, and am in the process of finding a prescribing physician to begin the MP. So I'm still in limbo myself right now, but hope to get started on it soon.
Oh my gosh. This is ME. But where to find a prescribing Dr...? I tried some links through the Marshall Protocol website but didn't have any luck. Any suggestions from you guys? (Corvin, sounds like you're in the same boat...)
It's an org site so I can't actually post it here, but I'll send you some more info in a PM.
I can't speak to much about viral triggers, probably because I've became a germaphob just instinctually so I never get viral infections. But I can talk about trauma triggers. Like this year the flare started coming back and my legs were getting heavy and painfull, but the relapse wasn't that bad yet, but then about a week later at work I was taking apart a piston connecting rod, and there are these 2 inch steel snap rings that hold them together. Well I was taking the snap ring out with a snap ring pliers, and it slipped off the end of the pliers. I was an idiot and wasn't wearing safety glasses at the time (especially because this happened to me before but it hit my safety glasses that time), and it flew right dead smack against my left eye. Most people probably don't realilize the force of something like this, but it's basically like if someone shot a metal object at close proximity with a sling shot right into your eye. Luckily the eyelid reflexes being so quick it didn't cut my eye, but the impact of it actually made me go basically blind in that eye for about five minutes, and it took another few days before it wasn't all toatally blurry anymore.
But anyways the moral of the story is my Sacoidosis inflammation just went totally insane after that, the next day is when all the severe arthritis set in, and I started to have chest pains and all the other typical symptoms of Sarcoidosis. In a way if I wouldn't have had that trauma to my eye maybe I would have never became symptomatic enough for the doctors to finally diagnose the Sarcoid, so in a way I'm sort of glad it happened, and my eye is fine now so no permanent damage :-)
Just something interesting I thought I would share with everyone, but if you talk to anyone with a chronic illness, they're is almost always some final insult to injury to the immune system that makes their illness more apparent. Not the cause, but it tips the scales enough that it puts the immune system in overdrive.