Had a lot of same symptoms
dermatomyositis and vasculitis - I looked into them online and the information I got did not look like what I have.
I could have thought vasculitis but it seems to have been ruled out - among my blood tests I had Creatinine Kinase (sp?) done which tests for muscle damage, ESR, Serum tests, haemoglobin, white cell count, red cell count. I had them all and they were normal on more than one occaision. So, I don't know!
I DID ask the doctor at the hospital "Is it vasculitis" and she said "No, you've had the Full Works test wise and we have ruled that out."
But what I WOULD love to know is:- If there is a bacterial infection then your white cell count raises etc... so, if there is a fungal infection would your white cell count raise then? The body is fighting infection on both occasions and if the white cells elevate when the body fights infection then surely some of my levels would be out even if there was fungal infection, even in the system?
I have seen pics online of people with dermatomytosis (sp?) and vasculitis and I really can't see it, Yeah one hand is paler and colder than the other, yeah my nails are bluish and I'm losing the moons off them, but the only thing is my symptoms did not match the pictures! I DO have poor blood flow in my right arm and don't know why. It could be something really simple.
But also when you are screened for autoimmune disorders they also check Rheumatoid factor and anti nuclear antibodies - if I've had the full works that must include them! Some of the levels would be out surely, if I had anything like an autoimmune disorder. And how would someone get that?
In the mean time I am still very scared.
My symptoms change regularly but at the mo they are still Sinus Tachy with a sinus arrythmia, poor circulation, skin itching (which I have had from the beginning of all of this - I had itching without rashes at the beginning), my nose itches all of the time, I thought at the beginning that I had an allergy because the itching began when I was on the antibiotics, but I had been on those same antibiotics while I was pregnant and was fine. I have increased vascularity, i.e. my veins pop up when it's warm or when I am laying down and they never used to, but that could be down to loss of body fat when I lost weight. My husband gets that all the time.
The possibilities that the cardiologist put to me were CFS/ME or Invasive candidiasis caused by antibiotics. In the mean time my GP won't give me any more tests and insists I need a psychiatrist. I have suggested all the conditions mentioned to me and her reply was "No way, you've had a full screening. We really have to treat the anxiety."
I'm so scared and confused.
Thanks for your messages - autoimmune disorders - I looked into vasculitis and the doctor at the hospital said when I had the "full works" blood test wise, they ruled it out. I asked her specifically about vasculitis and endocarditis. I had another chest x ray and she said it was all completely clear. She said my circulation looked fine. But I feel that something is being missed. The only thing I could think of was antibiotics!
It all started just after I was on antibiotics for a wisdom tooth infection, then antibiotics a week later for strep in my womb. I had a baby in Dec. I noticed problems on the day before giving birth as in getting stars in front of my eyes, I have been getting spots in front of my eyes since but my mum said she had that and it was ocular migraine and to ignore it so I accepted that.
The tachy started in April, at the time I was put on antibiotics for suspected strep throat as my throat was red (but not sore) they took a throat culture and by the time I finished the course I got the result which was clear. Then I had a sore mouth and coated tongue and the other symptoms like pain, fatigue etc... began.
I started getting the petechiae then. I had more blood cultures taken, serum levels, blood count etc... All was fine.
But I then emailled a cardiologist on Allexperts.com and asked: Does anxiety cause Constant tachy? He said, No. It's intermittent. So there is something physical going on.
I have a lot of pain in my arm even typing and my hand goes really cold.
I have itchy rashes on my legs too now.
I am starting to put weight back on, eating a lot. I just can't understand how this happened, I was healthy a few months ago.
I recommend getting copies of ALL of your lab workup. The run of the mill MD does not know how to properly work up vasculitis. Your problems were not caused by the use of an antibiotic - personal opinion. The antibiotic/candida people have been pushing this theory for decades and the medical studies _ good ones - refute it soundly. It is far more likely that the immune dysfunction was set off by the pregnancy (as I said before - pregnancy suppresses the immune system to save the mother/baby from rejecting one another) Pregnancy and delivery are WELL KNOWN to set off problems with the immune system. And your problems with vision began BEFORE the antibiotics, you said.
I think somewhere along the line either the right tests weren't ordered or the results weren't positive yet. I think you need to have a whole new "go" at it.
If you could get your lab results we could see if the work up did indeed rule out an autoimmune disorder. I'm being pushy here. Sorry, quix
Also, what about sarcoidosis, do you think that could be a possibility as well? I have been reading on it since my new PCP mentioned it with regards to my mildly elevated calcium level, and Lextgrim seems to have a lot of symptoms of it (so do I for that matter). Isn't sarcoidosis also an autoimmune disease? I had read on it in the past but couldn't remember that much about it. I think usually there is lung involvement (though not always) and they see granulomas or enlarged lymph nodes on CXR. Have you had a chest x-ray or chest CT since you first got sick? I think ACE is another test to help dx it. Maybe Quixotic could shed more light on it if she thinks it might be a possibility. I'm going to read more on it for my own enlightenment. You really should see a rheumatologist, though.
One more thing--I have autonomic neuropathy and my pulse is very slow (50s) and the neuro I saw at Mayo said it could be due to the autonomic dysfunction. It used to be very fast (always over 100)--so it can go either way (just like BP)--although I don't understand why that is.
Lextgrim,
I doubt very much that the hospital doctor was able to "rule out" vasculitis with a few blood tests simply because there are no specific blood test(s) to diagnose the various types of vasculitis (not calling anyone a liar, just saying that sometimes we think things are ruled out and find out later things aren't as black and white as we originally thought). Did they do a P-ANCA and C-ANCA on you? Even if they did and they were negative, they still couldn't rule all vasculitides out. There are different blood tests to help with the diagnosis, but sometimes I believe a biopsy is necessary. You could have any one of several autoimmune diseases, and if you could get an appointment to see a rheumatologist that would be a good thing (it sounds like you might be in the UK). There are other possibilities too-dermatomyositis, which Quixotic mentioned. Also, read up on sarcoidosis and see what you think. Maybe Quixotic can share shed some light on it too. Type in your symptoms with sarcoidosis or type in "sarcoidosis symptoms" and see the list you come up with. I know your symptoms were numerous but I can't remember them all now from your previous posts. The different connective tissue diseases are not usually diagnosed or ruled out quickly with one or two blood tests. Ask anyone who has one--sometimes it takes months or years to get a diagnosis, and sometimes they are never sure just which one you have.
I'm at the end of my day, but sarcoidosis is also a very good thought. It might show on chest X-ray with a mediastinal mass. The appropriate blood test was be for ACE (Angiotensin Converting Enzyme).
A repeatedl;y normal CK makes dermatomyositis less likely, though the enzyme can be normal when the disease is not active.
I'm going to bring up and read all your posts and list your symptoms and take a new run at it tomorrow. Also, comparing what your rash looked like to published pictures is only helpful when they look the same. It is not as helpful when they look different.
The patients I have known with invasive fungal infections were among the sickest people I ever saw in medicine. They were all in ICU's and none were up checking things out on the internet. Untreated they went downhill fast. No, fungal infections do not always raise the white count. They stimulate a different kind of white cell than do bacterial infections. If you had an invasive fungal infection there would be positive cultures for it on blood, urine, CSF, sputum cultures.
Later, Quix
Thanks Quix,
I do actually suspect that the rash on my legs is some kind of foliculitis caused by wearing tights, I do wear tights and stockings a lot and as for the fungal feet, I wear long boots a lot.
I'm glad to hear that you say that I would not be on the web if I had invasive fungal infection, but I will see about having cultures done just in case.
I did have the full blood count so all white cells were checked.
I wish I was in the US, I probably would have got better help - in the UK we pay National Insurance which contributes towards healthcare, we do have private options but you have to be "stinking" rich to be private. I on the other hand have a small business therefore my income is not huge, so we have waiting lists over here for specialists etc... What does also upset me is that over here, if you live in a small town like I do, small town practices do not recognise serious problems unless they show up straight away on tests.
I remember living in a small village and having a terrible itchy rash (different kind) for 4 months and I was given steroid cream for excema and it got worse and worse, when I moved to the city I saw the GP there who said "That is not excema it's scabies!" I'd been staying on a commune in Wales for a bit and caught it from someone there! That was years ago.
I am so glad to see you back. Several of us responded to your post here several days ago. We feel STRONGLY that your problem is likely a severe autoimmune disorder - either a type of vasculitis or something like dermatomyositis (which is a specific form of vasculitis). Vasculitis attacks the small arteries of the body damaging both nerves (like the vagus nerve) and other organs such as the brain, skin and heart. Did you read our answers? We gave you links to read more. I suspect that you have a serious conditon and feel that you need to see a rheumatologist ASAP!!!!
An autoimmune condition answers ALL - I repeat ALL - of the things you told us about, including the fungal (candida) infection, the joint problems difficulty swallowing, shortness of breath, peripheral neuropathy, tachycardia, fever, chest pain, fatigue, rashes (of many types), changes in your nails, itching, weight loss, mouth ulcers. EVERYTHING.
Someone needs to look at all your symptoms "Wholistically" - as a WHOLE. If you "surf your symptoms" you will go madly off in all directions! I believe the specialist that you need to see as soon as possible is a Rheumatologist - an arthritis specialist. Alternatively, but harder to find, would be a clinical Immnologist.
Here is the link to the first post we answered:
http://www.medhelp.org/forums/NeuroSupport/messages/2126.html
On the responses there Annie62 and I gave you some links to articles to read. We are both very concerned. Please answer, Quix