Discussions By Condition: Immune conditions

Immune Problem Diagnosis Help Please!!

Posted In: Immune conditions 5 Replies
  • Posted By: erobbins
  • February 12, 2007
  • 06:59 PM

Hello. I am a 30 year old female who has been mostly healthy my whole life (aside from bad asthma and frequent colds, chronic sinus infections) until 5 months ago.

I started getting terrible headaches behind my eyes, pain burning and numbness in my arms and legs sometimes very severe, constant nausea, constipation, bouts of vomiting, weight loss, extreme exhaustion, some confusion, some tremors, (maybe from lack of food I now realize) and granuloma growths on my face (that started about 1 year ago). I should say that before this I have never had any of these symptoms. The pain in my head is somewhat better now which is good.

I thought at first it was a bad sinus infection, CT scan showed significant infection and polyps, but antibiotics and prednisone cleared it u quite a bit and 3 ENTs told me I definately had another problem going on.

So I eventually ended up in the hospital after doctors saw me loose so much weight. I had an MRI of my brain and back that were normal, EEG and EKG normal (less mitro valve prolapse). Chest x ray normal. Spinal Tap was normal. I had lots of blood tests: the whole infectious disease workup came back normal (including lymes, etc), my sed rate, c-reactive protien, ANA all were normal. They had at one point thought it was Churg-Strauss, a rare form of vasculitus, but ruled it out b/c of these tests.

The abnormalities that have come up are slightly below normal white and red blood count consistently, high mcv and high mch (but no anemia). My eosinophiles are also high (I think this can be from allergies?) I have catiracs in my eyes which is very strange (and didnt have 1 1/2 years ago) My vitamin D is low, alkaline phosphate is low. My rhumetological workup showed low C4, but all other normal tests, for lupus, etc. I had blood tests from GI doctor, which came back negative. He wants to do the tube in my stomach, take biopsies and do CT scans of my stomach but havent done that yet.

I had a biopsy of one of the growths on my face that reported it was probably necrobiotic xanthogranuloma, a very rare disesase. Sarcoidosis was a possible alternative, but no one thinks I have this b/c my lungs are clear and my blood tests are negative and apparently this never happens? I had bloodwork done that showed no paraproteinemia, which 80% of the cases of necrobiotic granuloma have. So I am sending slides of the biopsy to NIH for a second opinion.

I am going to a chiropractor 3 times a week, was going to acupuncture but can't drive anymore (and wasnt getting relief as I usually do with acupuncture) so stopped. I eat really well (except with this when I am too nauscious or throw up). I had my hair tested for heavy metals and it showed some burdens, but my osteopath told me that there was also another disease process going on and I needed a diagnosis. So I have started chelation treatments, but just enough to get a urine test to see what my heavy metal burden really is. After my second chelation, I was violently sick for 2 days, which apparently never happens. I think it may be from whatever is wrong with my stomach, but I am afraid to get more chelation. At least I will know how much heavy metal toxcicity I have.

I cannot drive because I have some blurry vision issues (maybe from catiracks, or maybe from another granuloma growing in my eye socket). I am trying to still work and I have a job with a lot of responsibilities, if I dont work I cant give the work to someone else -but it is very difficult with all of the pain and exhaustion. And disability has been hard to get because of no diagnosis. I have a very hard time sleeping with the pain, am so exhausted that I barely get out of bed, and have bouts of barely being able to walk because of the pain/numbness in my legs. My body has also felt like it s a dead weight and I get muscle weakness.

I generally have a good attitude, but when I am in so much pain and when I am unable to function for weeks, months it gets to be really hard.

I just wanted to put this out there to see if anyone has any insight or suggestions.

Thank you!!

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5 Replies:

  • Hi there,Sorry, this post isn't going to provide you with any information, but I have been reading the immunology posts, and noticed you hadn't had any replies yet. I just thought I should let you know that I too have been trying to get a diagnosis for a couple of years and its still going. I dont have all the symptoms you listed so won't be much help for you - but I really want to encourage you to keep going, dont give up yet. This site has been useful for me and many others and I wish you luck in your diagnoses.Hope you are well.
    Anonymous 42789 Replies Flag this Response
  • See an immunologist and see if your have Primary Immune Deficiency Disease. Took me 15 years to finally be correctly diagnosed. MAke sure the immuno. you see KNOWS how to diagnose/treat PIDD.22996k
    Anonymous 42789 Replies Flag this Response
  • I also had low cd4 count amongst other things plus absolute lymphocytes.....You sound a little like me only a whole lot worse.Have they brought up the disease Histoplasmosis i am wondering?
    dougsgirl63 6 Replies
    • August 17, 2007
    • 03:21 AM
    • 0
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  • So I have started chelation treatments, but just enough to get a urine test to see what my heavy metal burden really is. After my second chelation, I was violently sick for 2 days, which apparently never happens. I think it may be from whatever is wrong with my stomach, but I am afraid to get more chelation. At least I will know how much heavy metal toxcicity I have. Be very, very careful with chelation - it can really be strong, and if you are immunocompromised it may be contraindicated. Follow your gut (pun intended) on that and stay away from more chelation for a while. Please get another Lyme test by Bowen or Igenex labs - there have been so many false negative tests and these labs are supposed to be the best around. I would just do this one more time...so many weird symptoms, many very debilitating, can come from Lyme. It sounds like you do have some toxicity, especially with your skin eruptions...a good acupuncturist who is ALSO a trained NCCAOM certified Herbalist may be very helpful. Have you tried any topical treatments for the eruptions? Could you describe them better - do they have pus, blood, do they itch or are they painful? How many do you have? Best wishesDOM
    acuann 3080 Replies
    • August 17, 2007
    • 04:42 AM
    • 0
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  • Please look into trying a product called Extreme Immunity with Immunlin, I think it will help everyone on this site.
    Anonymous 42789 Replies Flag this Response
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