Discussions By Condition: I cannot get a diagnosis.

horribly sick for almost a year

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: jennybean
  • April 16, 2008
  • 08:28 PM

somebody has to know i hope so because its driving me mad, i have so much pain daily.
Pain in joints, muscle weakness(lately) extreme fatigue,shooting pains in head. The only thing in blood work at first last summer they thought I had lupus, and said my rheumatoid factor was high, but then went down,the only thing consistant in bloodwork is wbc going higher and higher and red lower and lower, I did see in mt ct scan report lymph nodes swollen in aota, and just found out yesterday the lymes test came back with one band and to be positive its two bands, if positive at all doesn't that mean it was in my bloodstream at some point?Another doc said my lymphocytes were high is that the same as red blood cells? could this be why I'm so ill?I tried to post this earlier it didn't work I hope it does now because I don't know how much longer I can take this...and no the depression didn't come before the pain it came after, as I can't barely do anything at all and can't do anything at all without pain.

Reply Flag this Discussion

19 Replies:

  • If you suspect Lyme, you might want to look up posts by Blaze....
    Joan5555 316 Replies Flag this Response
  • High white blood cells, pain in joints...sounds like an autoimmune disorder--just because your white blood cells get high to fight off infection. Sometimes the body decides that your own parts don't belong there (like organ transplantees need to take meds to supress their immune system so the organ wont be rejected) so it creates more white blood cells to fight that part--(joints in arthritis) Check this site out just for a perspective. http://www.mylupusstory.com/autoimmune.html Also, lymphocytes are a kind of white blood cell (anything with lymph in it has to do with fighting infection) Good Luck and I hope you can find a Dr that will work with you and will take the time to help you understand what is wrong.
    Anonymous 42789 Replies Flag this Response
  • horribly sick for almost a year I am sorry to hear of your situation - please know that my thoughts and prayers are with you. _I had similar issues and found some help. This sounds like a systemic infection. Not localised which could narrow down some issues. The lymphocytes are white blood cells (WBC) and not RBC's. Wikipedia states about lymphocytes "An increase in lymphocytes is usually a sign of a viral infection ". Hopefully they will continue to test to narrow down what this might be. I have heard that proper testing of Lyme's is controversial, As Joan mentioned look for Blaze's comments and links on Lyme. The pain and neurological (depression etc) joint pain, etc. are all fallout from the immune system kicking in -there are many supportive nutrient therapies that would help lessen many of these side-effects and possibly strengthen the immune system to fight off the infection. I have suffered with similar problems are have been able to resolve or control thru nutrition and supplementation. You are welcome to continue to post, I would be happy to do some research and explore for you.
    LINENUP 122 Replies Flag this Response
  • wow,went to that site and have 41 of the 75 symptoms listed, I really hope they pay it mind when I go back to the rheumatologist may 13, I know I had a heck of a time getting them to listen when my daughter was sick for 3 years following her bout with lymes, and even through that I had no idea there could be so much involved. I kept telling them that I felt it was still the lymes when she was so sick (she tested 3 bands)but they kept saying no, it was chronic fatigue brought on by lymes. Luckily she's been better for some time now and I hope she continues to do so but it wasn't because of any treatment for lymes following the initial antibiotics because they just don't believe in any after effects of the disease. That site was very helpful, I realize its not the beginning stages as ive been sick so long but hopefully the can make me feel better. Thanks for the info, if you have any ideas how to express things so they understand clearly let me know, I am not one to go to the doc unless theres a limb falling off or something...lol, but I find myself forced to go to all these different docs because I've lost so much physically I can barely function, yet when I go they blow me off with an ibuprofen and a "well there's nothing specific" to which I go home and cry, because I know I'm not nuts yet I get no relief.
    jennybean 7 Replies Flag this Response
  • To linenup...thank you I would try nutrition, what types of food/supplements? I have been thinking lately my diet coulod use a tuneup, and maybe it would help with the sluggishness..
    jennybean 7 Replies Flag this Response
  • i don't want to scare you, but a high white blood cell count and decreasing red blood count and such fatigue could be symptoms of leukemia, are you bruising easily? have the drs considered this, done a bone marrow biopsy? do not let them take your case lightly, and don't give up, if your current doctors won't help, find another, get a second, third, however many opinions you need. good luck!
    Anonymous 42789 Replies Flag this Response
  • So go to a lyme specialist as Blaze suggests to obtain a diagnosis.
    Beth56 272 Replies Flag this Response
  • oct222...I thought of that too everything I look up always ends up there, thats the only thing they didn't test me for. When I go back in may I'll insist on the two things, a lymes follow up and a follow up on that. They seem to be the two main things coming up, and some days I truly feel its my last day the pain and fatigue are so bad, but would I have leukemia for a year and them not notice through all my appts and two hospital stays?Beth56 I hope they listen because I need a reerral for an infectious disease doctor, and although its in my blood they said its not lymes beause I merely have one band.
    jennybean 7 Replies Flag this Response
  • just found out yesterday the lymes test came back with one band and to be positive its two bands, if positive at all doesn't that mean it was in my bloodstream at some point?. No it doesnt mean at all that it was in your bloodstream at some point. Sometimes this result is just caused by the testing procedure itself (the tests are not all that great)... and that is why they put a criteria down that it has to be at least so many bands before they will say lymes. ..................... Make sure your doctor rules out leukemia as you have many of the symptoms.
    taniaaust1 2267 Replies Flag this Response
  • thank you for clearing that up for me, I really couldn't understand that result now I do.Yes I'm going to insist they look into that, It does keep coming up
    jennybean 7 Replies Flag this Response
  • Hi, I don't know what lab you've gone through to be tested for lyme, but this lab: http://igenex.com/Website/ is Much, much more thourough. They specialize in identifying Lyme, and other tick borne infections, like babesia, which can cause very similar symptoms. They're an out-of-network lab for insurance companies, but if you submit a claim, many companies will pay at least part of the cost (mine was $600, but well worth it. I tested negative through other labs, and positive on numerous strands through IGeneX). Most regular MD's and even infectious disease drs just accept the neighborhood labs results, which can be inaccurate. My rheumatologist ordered the test for me, or naturopathic drs usually will also. You may have Lyme, but aren't scoring high enough on the test for numerous reasons (see this website: http://www.anapsid.org/lyme/lymeseroneg.html) My lymphocyte count was doing a similar thing to what yours is doing, and I ended up having a bunch of infections, so I think it's wise you're looking into that. Hope you can figure out what's wrong and get to feeling better!
    Writer53 10 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • To linenup...thank you I would try nutrition, what types of food/supplements? I have been thinking lately my diet coulod use a tuneup, and maybe it would help with the sluggishness There are quite a few sites:: my first thought is Jordan Rubin's book "The Maker's Diet" and I am sure there are many more. Trying to eat food the way close to their original intent and not processed w/ additives, preservatives, herbacides and pesticides. Eating organic would be a hugh help. Amazon says about the Maker's Diet::: "Editorial ReviewsAmazon.comMiracle cure stories abound when it comes to natural healing. A super nutrient reverses cancer after chemotherapy has failed. A Chinese herb lowers high blood pressure in a patient with heart disease after being dismissed as quackery by doctors. Jordan S. Rubin’s account of returning from the medical abyss, however, includes an original twist. After several years of battling Crohn’s Disease, which included a small fortune spent on both conventional and alternative treatments, as well as trips abroad in search of help, Rubin weighed only 111 pounds and, at just age 21, thought his life was over. At the urging of his father, a naturopath, he contacted an obscure nutritionist in California promoting a diet based on the teachings of the Bible. Yes, we’re talking what ****s ate: kefir, lamb, sprouted breads, eggs and meat from free-range chickens, and plenty of fresh fruits and vegetables. Rubin also started to pray and added a new powder supplement containing homeostatic soil organisms (HSOs) to his diet. Four months later he weighed 170 lbs and was on the road back to his former athletic and healthy self. Inspired by his experience, and now with advanced degrees in nutrition and naturopathic medicine, Rubin has crafted The Maker’s Diet. While the faithful will surely find the book of interest, Rubin’s command of the scientific issues underpinning his recommendations may also appeal to those more accustomed to studying food labels in search of what to eat than ancient religious texts. --Patrick Jennings
    LINENUP 122 Replies Flag this Response
  • I think a trip to traceelements.com would be a great idea. This test is non invasive and affordable, it helped me so much! Ask your doctor to check your vitamin D3 status - low levels are implicated in immune/autoimmune conditions :: see these links:vitamin D and autoimmune :: http://www.cnn.com/2004/HEALTH/conditions/01/13/vitaminD.ms.reut/ http://www.naturalnews.com/003069.html Colostrum is an immune helper =many possible benefits : colostrum :: http://www.raysahelian.com/colostrum.html anthocyanins are powerful antioxidants found naturally in red veg/fruits this article sheds light on these powerful substances : http://www.newhope.com/nutritionsciencenews/nsn_backs/Dec_01/antho.cfm Vitamin B complex is very supportive of immune health vitamin B2 info : (this b vitamin helps me tremendously but makes you pee yellow : http://www.spectracell.com/research/nutrition/vitb2.html a good b complex ;;; http://www.vitaminlife.com/product-exec/PNAME/Coenzyme_B_Complex/product_id/13646 a very good vitamin C complex ::: http://www.iherb.com/productdetails.aspx?c=1&pid=8328&utm_source=gb&utm_medium=pf an article that I think you should look at (just a suspicion) http://www.naturalnews.com/020550.html Immune helpers :: http://consciouschoice.com/1995-98/cc096/immuneboosters0906.html As always, it is best to discuss these considerations with your health professional.
    LINENUP 122 Replies Flag this Response
  • JennyBean::: Let me know if that article posted above entitled " an article that I think you should look at (just a suspicion) //www.naturalnews.com/020550" applies to you. I need to know if my intuition is on :)!
    LINENUP 122 Replies Flag this Response
  • JennyBean::: Let me know if that article posted above entitled " an article that I think you should look at (just a suspicion) //www.naturalnews.com/020550" applies to you. I need to know if my intuition is on :)! I am definitely going to start working on my diet today! You know its funny I shouldn't be surprised at the state my system is in today, when I was younger I was an EXTREME dieter, not only did I deprive my body of much needed nutrients, but used an awful lot of sugar substitute too. Thank you very much for the info, I'm starting immediately.
    jennybean 7 Replies Flag this Response
  • You are welcome. Let me know how it goes. So maybe I was right about the info on aspartame - landed on that page by accident (if you believe in accidents!).
    LINENUP 122 Replies Flag this Response
  • just a little more info...went to the rheumatologist the other day, they said all my tests except vitamin D were ok...vitamin D level was 6 they said it should be thirty. The muscle test didn't come back, so I have to get that redone, and the swelling was visible at some of my joints so they were able to see that. They want me to get a colonoscopy(been putting that one off for months, when I was in the hospital for my kidneys before a "thickening"of the colon was present)so they want me to get that done, and some basic cancer screenings to make sure everythings ok on that end but they really feel its fibromyalgia and some form of inflammatory arthritis. They put me on vitamin D and an anti inflammatory(they never helped before but I'll try because it was between that and a steroid, and I blow up like a balloon on streroids)and want me to do physical therapy and get a sleep study done.
    jennybean 7 Replies Flag this Response
  • just a little more info...went to the rheumatologist the other day, they said all my tests except vitamin D were ok...vitamin D level was 6 they said it should be thirty. The muscle test didn't come back, so I have to get that redone, and the swelling was visible at some of my joints so they were able to see that. They want me to get a colonoscopy(been putting that one off for months, when I was in the hospital for my kidneys before a "thickening"of the colon was present)so they want me to get that done, and some basic cancer screenings to make sure everythings ok on that end but they really feel its fibromyalgia and some form of inflammatory arthritis. They put me on vitamin D and an anti inflammatory(they never helped before but I'll try because it was between that and a steroid, and I blow up like a balloon on streroids)and want me to do physical therapy and get a sleep study done. Glad to hear that you have a diagnoses (well a couple of them now). Exercise can often help fibro some if it's just that. Vitamin D if deficient can also cause a lot of different issues as vit D affects the body in many ways from affecting other vitamin absorption to other things.
    taniaaust1 2267 Replies Flag this Response
  • Pain in joints, muscle weakness(lately) extreme fatigue,shooting pains in head. The only thing in blood work at first last summer they thought I had lupus, and said my rheumatoid factor was high, but then went down,the only thing consistant in bloodwork is wbc going higher and higher and red lower and lower, I did see in mt ct scan report lymph nodes swollen in aota i just checked out your original post again.. seeing you mentioned they think you have fibromyaliga as part of your problem. I did that to see just what other symptoms you had, as fibro can cause several other issues as well.. but what i started to think.. is that maybe you have chronic fatigue immunity dysfunction syndrome (CFIDS). (i didnt suggest CFIDS to you previously as your condition sounded like you had another inflammatory thing going on...some of your symptoms werent consistant with CFIDS but if you have also some kind of inflamatory type of arthritis and FM.. well just maybe you actually have CFS and not just FM) FM patients do get tired... but CFIDS patients get even more tired. A quarter of people with Fibromyalgia.. actually have CFIDS (and up to 70% of people with CFIDS have FM as one of the symptoms). With CFIDS.. you can have symptoms that are consistant with your body trying to fight something .. also pains in head and muscle weakness is the norm with CFIDS where as FM patients may not necessary get muscle weakness. I suggest you research CFIDS to see if you fit the diagnostic criteria for it just in case you have FM as part of CFIDS (expecially since you talk of a lot of exhaustion). People who have FM by itself are advised to exercise... but if one has CFIDS as well as the FM.. exercise isnt always a great idea and needs to be done with extreme caution so hence not to worsen condition. (if it is CFIDS... you may find yourself with a lot more symptoms)
    taniaaust1 2267 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.