Visit To New Immunologist (Rheum)

28 Oct

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Visit To New Immunologist (Rheum)

So far at UCD I went From a rude doctor, to a decent doctor, to a flamboyant doctor. The doctor last month was a Rheum and he was really nice and believed every thing I had medically wrong but he said I was “too complicated” so he sent me to a semi-retired imune/rheum/allergist doctor today. I was going today just to see if I do have a Primary Immunodeficiency or secondary or why my immune is so low. We went to see if I should continue the IVIG (Gammagard) for the next three years.

First a doctor studying under my immune doc came in and asked me a ton of questions. All about my lupus, immune, auto-immune diseases and more. So every answer was “yes”. He seemed very nice and friendly. Then he went to get my actual doctor. All of the sudden in walks this older man and he had two other doctors follow him in. He never explained why two other doctors where in the small room with me. It was very awkward as if he was a celebrity and he had his two body guards. When he would ask a question or not understand what me or my mom were saying he would look at his other doctors as if we were idiots.

He kept starring at the ground and wouldn’t look me in the eye. He would just say something like “I don’t know why you are here who sent you”. Just being rude, abrupt and bold. He said “if I was your doctor you would not be on IVIG until I knew much more”. He also looked at my lyme test and said “I don’t know what this means it’s not FDA approved”. Ummm okay but it is also 98% accurate and they grew lyme in my blood within 10 days so look at that part. These doctors always act like we are stupid and don’t know medical terms yet I know everything they talk about. So he was basically saying he doesn’t know what I have since my testing isn’t complete in his eyes. But when 3-4 doctors with MRI’s or positive testing tell you that you for sure have something, then one doctor says he doesn’t believe them, it’s like they are saying they are smarter than the other doctors.

So then the old “I need to know more and I think you need to go to a psychologist it may be depression” came up. Fed up I said “NO! , I am not going to another damn psychologist and going through this crap again”. I said “I am somewhat sad because I am sick, I am not sick because I am depressed, I have already passed the psychologists visits and they said I was fine (plus I have a background in Psychology)”. Besides I was there for my immune so he thinks I am stupid enough to think my immune is so low because I am depressed? He just wants to rule out what 20 other doctors said I had wrong and say it is depression, just like all doctors do when they don’t know what is wrong or how to treat you. Well sorry medical system I am not taking “depression” as an answer or even to be brought up anymore I know your stupid protocol. An old “friend” who is a nurse (not sure how) said that she and doctors in her hospital use the terms “Fibro and Lyme” as a nice way of saying we are “lazy and depressed or have mental issues”. She is no longer a friend as you can see why.

So the immune doc started testing my muscle strength. He was pushing real hard and my knees hurt bad and he kept yelling “push, push, push”!! Then he sent me for a blood test and he says he is seeing if a vaccine from years ago comes out high then I am fine and don’t need IVIG or if it comes out low I need another blood test to challenge a new vaccine. But vaccines aren’t the best thing with lyme. I hope I don’t have a primary immunodeficiency but at the same time I do so he won’t say “see told you that you are not sick” or because it would explain why I have always been sick even as a baby. If I don’t have PID then I will need to find out why my immune is so low but the doctor didn’t seem concerned my numbers were dropping like crazy.

So he walks out of the room and my mom said “do we wait here” and nobody responded. It was just like we were bothering him and his time. Like he was so big bad movie star and he just walked out. Umm thank you grumpy! Obviously I am very sick even if I don’t have the immunodeficiency so show some compassion.

My Lyme doctor still wants me on IVIG and wants my immune to be higher or boosted. So I may be starting three years of an IVIG study program this month. I will wait to see what my immune test results say but either way I need immune help and this immune doc said if my test is fine then don’t come back.

Hop you all are having better luck and better days. Keep on pushing.

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11 Responses to “Visit To New Immunologist (Rheum)”

  1. susan October 28, 2014 at 7:21 pm #

    Blood prodicts scare me because Babesia is SOOOOOO tiny they can hardly screen for it accurately…..as told by a Lab Tech I met…and Dr. Schaller Date: Wed, 29 Oct 2014 02:06:41 +0000 To: sspeters01@hotmail.com

  2. Julie October 28, 2014 at 8:20 pm #

    I hate this whole mess for you. As if being sick isn’t enough you have to deal with an arrogant ass of a Dr.

  3. Meg murray October 29, 2014 at 11:07 pm #

    Hello I am so so sorry you had to endure the ignorance of so called educated medical professionals’, I empathize fully been in your shoes, I do have a good Lyme doctor now in Newport Beach ca not sure where u live, sadly she does not take insurance but does give super bills insurance suppose to be 90 percent coverage only paying ten percent this doc I have has lots of patients with low immune she has several on that Iv u mentioned the company rep for the Iv has helped many get theirs paid for by special. Programs fortunately though I had Lyme 11 years and no one listened just said I should take antidepressant and just this past jan was finally diagnosed but fortunately no co infections just some virus’ and human system stronger than doctor ever imagined still have a long road but with ok protocol Ivs for the brain and the glutethione Ivs I am thinking clearer I pray something changes cause all of this injustice is medical evil god bless u meg murray

    • 49er Bryan November 7, 2014 at 11:53 pm #

      Thanks. I have a good Lyme doctor but I just can’t find a good doctor near by who will see me when I get sick with the flu or non-lyme related issues. They all just say I am “too complicated” and to go to another doctor. What kind of care is that? Hope things are going good for you.

  4. pj November 4, 2014 at 4:15 pm #

    I am sorry you were treated this way.
    guess he thought that textbook he read 50 years ago had all the medical knowledge of the world. Not.

    so sorry.

  5. pj November 4, 2014 at 5:10 pm #

    Forgive me, I havent read your whole blog, but for lupus, did they do an anti-dsDNA test.
    I believe this test was mentioned in horowitz book, found in half of lupus.

    did they test for antibodies to histone, this is seen some in drug induced lupus.

    interestingly from a lymie point of view, is aPLs-antibodies to phospholipids-also found in syphilis!! Supposedly, some with lupus have false positive for syphilis, makes ya wonder if it is because they have lyme.

    there were some other tests mentioned on a site lupus.org.

    sending you rest and recovery wishes.

  6. pj November 5, 2014 at 9:49 am #

    K spreen’s book mentions that use of minocin has been associated with a lupus like syndrome.
    worried about your meningitis, that must have been so frightening.

    Perhaps they could slow down the infusion or reduce the dose of the ivig, since these are both mentioned as leaning towards meningitis.

    wishing you well.

    • 49er Bryan November 7, 2014 at 11:52 pm #

      Thank you. Have a much better week.

  7. shayfaulkner November 13, 2014 at 6:56 pm #

    I really hope you have your answer from the test results by now. It’s unfortunate that your story is common in the Lyme Community. I have deficient IgA, low IgG and a low side of normal IgM I went to a hemotogist. She said she doesn’t deal with IgA, IgG or IgM. I stated but you are a blood specialist, right? SHE said yes but I don’t deal with “those things”. She tested me for a platelet disorder which it turns out that I have. When I asked about treatment (IVIG), she said no. But did tell me that if I had a surgery of even a tooth extraction that I would need a blood transfusion first. So, it has been a waste of time, money and effort. I wish we had doctors that would treat us…our conditions and treat us like human beings.

    • 49er Bryan November 20, 2014 at 12:23 am #

      Sorry to hear about you platelet disorder. I have clotting but then if I take say a baby aspirin I bleed out of my ears so it’s weird. I did get the results which were all not good but no follow up was set yet. It’s like they don’t care. I told them I was in a hurry to get IVIG going. One day we will be taken more seriously. Hang in there.

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