I have had ongoing health issues for two years, with the majority of the problems occurring in the past year. I have seen numerous specialists along with countless visits for blood work and nobody can pinpoint what the cause is. I have been on so many medications that my body has become over-sensitive to anything and everything, resulting in multiple allergic reactions in the past year and unsolved inflammatory problems.
An ENT is convinced it is an allergy even with blood work coming back negative, an Endocrinologist is confused by my sub-clinical hypothyroid labs with an inflamed thyroid and a mix of hypo- and hyperthyroid symptoms. My primary physician thinks it has to do with a very minor concussion I had two years ago (although MRI was clean and Neurologist disagrees) or an unidentified autoimmune issue, my eye doctor thinks it may be autoimmune, and everyone else blames anxiety for everything. Blood work typically comes back with nothing indicating an issue. I have had CBCs, Sed rate, thyroid labs, Rheumatoid factor, Iron, Calcium and Magnesium levels, and nothing is off the charts enough to be a factor in what's wrong.
I have unresolved chronic inflammation in my eustachian tubes that started suddenly last fall (and has caused hearing hypersensitivity), unexplained reflux issues for two years, inflammatory acne, inflamed eyes, body aches and tension. I feel as though my blood sugar fluctuates too much, often getting lightheaded and shaky. I am very sensitive to sugar, cannot handle caffeine (not even decaf coffee) and alcohol makes me feel ill after two sips. I feel as if my body never fully absorbs nutrients even though I eat very healthy. My heart pounds easily, sometimes from simply running up a flight of steps.
I have been on numerous antihistamines to try to mask some of the inflammatory problems in my ears and to help with anxiety but am currently off of them for a few days while awaiting an allergy skin test. I am absolutely miserable, feel very weak/shaky and lightheaded, along with anxiety being much higher.
I just want to find an answer for what is going on because everybody is at a loss. It has completely changed my life and has exhausted me physically and emotionally. To say the least, it has been an incredibly frustrating experience and I wish we could find an answer.
Please, does anybody have any ideas?
Chronic eustachian tube dysfunction
Inflamed eyes and inflammatory acne
Sub-clinical hypothyroid with palpable thyroid
Heat and cold intolerance
Lightheaded easily and brain fog
Anxiety that is worse when I'm physically feeling worse
Honestly I'm wondering if you should drop all of it clean your system and start over. I have always found more answers at my Neurologist. I wonder if a Spinal Tap has been done because they can get so much information from that alone. The fluid in your brain and spine act like a radiator in your car. The fluid circulates through your brain down your spine then back through your brain. That test is liable to show something that won't show up on an MRI or in blood tests. Not sure but see if it's possible for you to have it done, even if for nothing other than to rule out other possible autoimmune diseases.
Thanks for the suggestions so far. I saw the allergist yesterday and tested negative for 100 allergens. Puts me at another dead end but because of that, he suggested looking more into the thyroid problem. Some days I wonder if I really need to be on synthroid, but it's so hard to say since I exhibit symptoms of both hypo and hyperthyroid. I'm having thyroid levels checked in a month and am also being tested for a second antibody that my GP hasn't checked.
At this point it comes down to my thyroid, ears, and stomach. I agree that I need to get off of all medications and detox my body, but it's hard to do that when I'm sort of relying on a few of those meds to keep anxiety at bay, keep my ears sort of functioning, and prevent acid from burning my throat and worsening my ears.
I haven't seen a rheumatologist, mostly because the preliminary blood work for autoimmune disease led my GP to believe my issue isn't autoimmune.
I have noticed that my calculated osmo has been consistently low all year, not terribly low, but below the normal range. But my sodium levels are fine, sed rate normal and basically everything in the CBC is right in the middle of normal ranges.
Some days I think I'm crazy. But I can feel the inflammation in my ears and the burning in my stomach. Something isn't right.
I understand your grief just hang in there, there are many of us that will be glad to stick with you during this process. Just some things happen that are strange because of the brain, something misfiring. That is why I suggested it. I still don't think it would hurt to ask them to perform it and just rule out some more possible problems or maybe find a problem. DrOz has some recipes and regiment for a 48 hour flush maybe you would prefer something like that vs a dropping all med detox. I'm sure there are more out there as long as they are healthy for you.
Keep us posted please
I used to share these symptoms
- Reflux/nervous stomach
- Inflamed eyes and inflammatory acne
- Sub-clinical hypothyroid with palpable thyroid
- Lightheaded easily and brain fog
- Anxiety that is worse when I'm physically feeling worse
Most of them went away when I cut out gluten. I'm not intolerant enough for an official diagnosis (most people aren't, so allergy tests aren't useful here). And yes, gluten intolerance is the "thing" right now, but it may be worth a shot to go gluten free for 30 to see if it's causing your symptoms.
Hi everyone, so glad to see all of this support, thank you!
I have a check-up with my eye doctor in the morning, hopefully my eyes look better and I can stop the steroid eye-drops I've been on for almost a month. I am wondering if maybe the eye inflammation is related to the antihistamine nasal spray I have been using since February. While it has been helping a little bit with the ear inflammation, it may be causing too much irritation for my eyes.
Now that the allergy testing is complete, I may try to establish a gluten-free diet for a month. I attempted this in the past but for a shorter period of time, so I didn't have any definitive results from it.
As far as probiotics, I have actually been doing this to a certain degree! I have Acidophilus (2billion) that I have taken when on antibiotics, or beginning new medicines that irritate my stomach. I haven't been taking them as of late because I have become addicted to greek yogurt (the kind with active cultures). I really should cut back on the yogurt though, as it is causing some constipation and worsening the reflux. I am fairly certain I am lactose intolerant so the yogurt may not be helping as much as it should. I can tolerate some cheese and ice cream, but I typically avoid all other dairy products.
I am trying to decide what the next step should be. I could call my ENT now that the allergy testing is complete, but I don't think he has any other ideas. He was convinced the irritation in my sinuses was from allergies. My primary physician has been at a loss for awhile, and I am not scheduled to see the Endocrinologist again until the end of November. I am considering scheduling an appointment with my dentist to re-evaluate my TMJ condition. I use a bite plate at night but since every other route has been looked into, maybe he could shed some light on my ear issue.
You know.. this is kind of left field and Dr. House-ish, but does anyone know much about mold sickness?
I have been using a Sigg water bottle (stainless steel) for almost three years now. I rinse it out daily and have tried cleaning it a few times with a toothbrush, but I find that the cap gets covered in a black film (which I try to wipe off regularly) and the bottle itself gets a less filmy version of this toward the top.
Is it possible that my water bottle has been making me ill? I started having acid reflux and supposed thyroid issues two years ago, and then the inflammatory issues began about a year ago. If it's from mold, it shows a connection in the progression of illnesses maybe? I did test negative for mold allergies but I'm guessing molds can still make anyone sick regardless of allergies.
I haven't read a whole lot on mold infections yet, but I thought I would throw it out there while it's on my mind.
Last edited by fidelis7; 10-14-2011 at 11:50 PM.
I won't tell you its your water bottle, but here we used to drink a lot of sweet tea. Well I'm very addiment about keeping the tea pitcher clean. I also use my coffe pot to make it in. So I don't onlt wash them I also bleach them. Well my sons didn't used to be so ggod about it. One time I got up a darnk a glass of tea and became so sick I thought I ws going to have to go to the ER. Finally the pain recided. A couple of months later I began having very serious female issues, all of a sudden. When I went to my gyno and haad tests run, come to find out I previously had Ecoli and the bacteria moved from from stomach into my uterus, aint that something. This has happened twice because the children didn't clean them as well as I do. It may not be bacteria causing your problems, but I would say it sure is not helping you any. I literally bleach the pitcher and coffee pot, then wash again in hot soapy water. I now wash all dishes in bleach and hot soapy water. Just didn't like what happened and don't want to risk it again.
I do hope you are getting some way towards a diagnosis, though this may not be easy... mine took many years! Many conditions are overlapping (a bit of this and a bit of that...) and we are all individuals and experience symptoms differently, BUT I do agree with "Optimystic", that you definitely should get yourself tested for LUPUS.
Good luck and best wishes, Petals17.
Well, I just spent a half hour with my dentist discussing everything that has been going on and getting his input. As far as he can see, my TMJ isn't causing the ear issue. It's another dead end but he really thinks it's autoimmune and that I need to see a rheumatologist. I don't think there are any in my area so I will have to find one somewhere and get a referral.
iwillgtwell: Wouldn't the various blood work I've had done over the past year indicate that I have a bacterial infection? My CBCs and metabolics have been normal.
Another thing I keep forgetting to mention, mostly because I've had it for years and no doctor has ever brought attention to it, is that I have a swollen lymph node on the right side of my neck. It's about in line with my the temporomandibular joint and about an inch below my jaw. I have had it for probably close to 10 years now and it has never gone away. It's probably only the side of a a kidney bean, but it's hard and has been that way for as long as I can remember.
It breaks my heart to see your plight. I began 14 years ago, when there was no internet; and everyone was called "bi-polar" or in my case "uni-polar"; because I could not get up...for 2 years...I just dropped...couldn't move. Slept 22 hours a day. You are intelligent and WILL figure this out. Please remember when you do, to go back to this and tell us what works/worked for you. Because everyone on here had their own journey of Doctors only looking at their little Corner. To help you keep it all straight, I would suggest cutting and pasting the comments of suggestions to one word document. Then when you see a clue, like I just did in yours of "osmoality", I copy your comments and google that. I just did the same with iLuv's clue with Spinal Tap. This way when you need to reference something back you can. You can look on the other boards on here under topics of Lyme, Mold, Chronic Fatigue, Fibromyalgia and you will see the same underlying non-functioning frustrating problems. Then make a spread sheet of dates and what you are trying and comments on how they're doing. It's hard to know what works when you are trying many things at a time. iluv mentioned: Detox & Water Bottle. YES. Mold is a biggie. When I first dropped, I moved into a house that had been closed up for many years, and had an upstairs bathroom leak down in the wall. Looking back, we believe that may have been One of the issues. A flemsy plastic shower curtain alone makes a toxic soup for us to breath as we take a shower. Add to that some mold and the clhorine in the water and there we go. I JUST learned this. Also, drink at least 3 Quarts of water a day, and don't skip a day, you body witll retain it, the next day when it gets it. Real hard to get into a habit of this. It increases your blood volume and helps the blood cells to get to your head. Do you have low BP? Acidipholis, keep up with that. There's 2 ingredients parts you must have, and I think yogurt only has one. Look it up on a good site, like NIH, or a .edu cite.
Iluv also mentioned Detox. Yes, do that, as much as you can. And go online and look up the symptoms for parasites.....same thing. Most docs won't do a Stool test unless you insist. (because they have to send it off and don't know where to send it; there's just a few).
Tests You wondered about tests for lyme, why docs didn't see that. Because most don't acknowledge it at all. There's not even a place to Check it on the Lab order form. Insist on it and the others like Bartonella, Eptein Barr Virus, etc, as iwillgetwell suggested. But you REALLY need to find a LLMD (lyme litterate Doc) in your area. Start with infectious disease in your area, if there's not one listed. Speaking of Labs. Get your hands on every lab test. And keep them. You will not believe how some things one Doc called "normal", is not; they don't even mention things, and that's a clue you've missed.
Optimystic & Petals 7:They are right, too. Do get checked for Lupus.
You mentioned constipation, yes. Everyday you are constipated your colon's junk is oozing into your system. And lots of good hiding places for the parasites.
Altari is right on with the Gluten: This is Free but not real easy. Even artificial sweeteners have Gluten in there. (which by the way, have the similar symptoms.) Look up hypoglycemia too. [/LIST]Crazy If a person asks if they're crazy they are not...because Crazy people think there's nothing wrong with them. BUT....beware...people you know, including Doctors, will begin to doubt you. Because I'm guessing, "you don't LOOK sick"...... Your determination to find an answer will appear as OCD... Keep the faith. Take comfort in your cyberfriends here until you figure it out. And remember to find us (and me) on this board to tell us what worked for you....WE WILL figure this out.
Wishing you all lots of good days....in a row.
Tammy in SC