Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

SCIG - Test to Assess effectiveness?

Discussion in 'Alternative Therapies' started by minkeygirl, Apr 17, 2015.

  1. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,643
    Left Coast
    So I finally got an immunologist to diagnose me with hypogammaglobulinemia and wants to start me on a 6th month trial of SCIG.

    Here's the problem. He glommed on to my symptom of fog and wants to use that to determine effectiveness of the treatment by having me get a Cognitive Assessment. This is not to decide if I'm stable, only to see if the treatment works.

    I think he's nuts and told him. There is no test that I know of that is used to assess the efficacy of the treatments, that it's usually subjective reporting. And who knows what is causing my fog. I've been discussing with my NP the idea that it could be thick blood and by treating that it'll clear up. Fog is just one of many issues I have.

    And I'm pretty sure @Daffodil said immunoglobulin caused fog for her

    So how can I get this guy of this track and what can I get him to use instead of? I think he may need something to justify to my insurance (medicare HMO) to get it and continue.

    My next appointment is going to be to go over treatment plan. I really don't want to 1. waste my time and energy on this assessment and 2. it's not a valid test and 3. WTF?

    Any Ideas? Please tag me so I get an alert.
     
  2. Daffodil

    Daffodil Senior Member

    Messages:
    4,887
    Likes:
    4,616
    @minkeygirl......wouldnt they just want to know if you still have low total IGG after the infusions?

    how about NK cell function or CD57?
     
  3. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,643
    Left Coast
    @Daffodil I was gonna PM you. I know it makes zero sense to me that he want's to do this.

    I had IgG tested last month and about 5 months previously and the numbers were exactly the same.

    My NK cell function early last years was 236, dropped to 4 8 months later and now is 13. Not sure about CD57.

    He somehow got focused on the fog which could be from my thick blood, infections, inflammation, who knows? He told my PCP he wants me to see a psychologist to get this testing

    I'm just trying to find something in writing to show him what is the standard and no where no how no way does cognitive assessment have anything to do with this.

    And this is what happens when you see an Allergist/Immunologist vs. Clinical. But I have no choice and the first one I saw wouldn't even dx and her treatment was another vaccine.

    I'm wiling to do whats reasonable, like bark like a dog, but this? WTF?
     
    Last edited: Apr 17, 2015
  4. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,643
    Left Coast
  5. Daffodil

    Daffodil Senior Member

    Messages:
    4,887
    Likes:
    4,616
    hi minkey. your NK cell function was 236? wow. you mean the LU30 test, right?

    If it was that high, maybe the drop is a good sign? I thought most CFS patients had very low NK cell function. mine was once 2! i think normal people have like 60 or 70 or something.

    tell your doctor it makes no sense to get cognitive testing. that might not improve for a long time and might have little to do with the SCIG...tell him you have spoken to hundreds of patients by now and that is not going to be a good marker! tell him that sometimes that takes years to improve and stabilize!

    honestly, i dont think there is a good marker you can go by.
     
  6. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,643
    Left Coast
    I might have been on immune mods for that test. I don't remember. Yes LU 30.

    Also, my blood is a little thick and we've been discussing (my NP AND PCP) for me to get a blood thinner. My np thinks that could be a big part of my fog.

    Because of that, and the risk for clotting, I want to get a blood thinner. No way to know what is what.

    So Yes to everything you said.

    I'm bringing him the CCC that says this is part of the disease.

    I'm going to tell him he could pump me full of antibodies and it won't necessarly help.

    I want to ask him to tell me who on planet earth uses that to assess if it works?

    I'm going to tell him to xray my bunion to see if It works. That makes about as much sense as a cognitive assessment.

    No way does my insurance ask for that. I may even call them and ask what they require.

    I'm waiting for a referral so I have a few weeks to get my info together.

    Let's start a pool to see if I get this. I was planning in starting valcyte. I was gonna hold off but I don't know now since this is going to be a long road I think.

    Oh and the fact that he thinks I can sit through that testing shows he's clueless. Shock.
     
    heapsreal likes this.
  7. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,643
    Left Coast
    @Daffodil I heard from the PID org. She was kind if mealy mouthed and said CVID (which is not my DX) has many causes and a doc may run various test to help with treatment.

    Then she gives me a link for doctors to contact them for advice in testing and followup.

    Haha.
     
  8. Daffodil

    Daffodil Senior Member

    Messages:
    4,887
    Likes:
    4,616
    wow, interesting. yea your doc sounds nuts. LMAO @ bunion
    LMAO @ mealy mouthed
     
    minkeygirl likes this.
  9. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,643
    Left Coast
    @Daffodil well you won't believe this. He says because I haven't been plagued with infections then this is the way to prove it is working or not. I said I don't understand how my knowing how fast a car can drive has anything to do with this? He said this would really help me even though doing the tests would do me in. He said that would prove something if you could get through them in 6 months. NOT IF THE STUFF IS FROM ME ME/CFS!!! He's just stuck on that.

    He said I was on the edge and he needed this to push for me to get it. But the more the conversation went on the more I realized this guy is clueless. First, he even said I'm an allergist. Well then send me to a Clinical Immunologist?

    He did say he was going to ask my PCP to refer me to an infectious disease doc. Yea they'll they'll love me.

    Then he says I should prove I have infections. I said run some labs, He refused and said my PCP should run them. I told him I was taking a macrolide and I had relief and he grilled me about what I got and how I got it.

    I had shown him so forms that I talk about on another thread about using those Daily Living tests to see if I'm improving and he says See! This is what I'm doing. My checking a box saying I can climb in and out of the bathtub is not the same thing.

    The bottom line is he won't do the immunolgobulin unless I get the cognitive testing. which I am worried will screw me with my disability. So he's withholding treatment.

    I'm now trying to decide what I want to do. I'm looking for documents that will bolster my case and prove he's out of his ever loving mine, and then approach my insurance advocates and see.. I don't want to do this out of principal .

    Oh and he kept talking IVIG even thought my numbers are hight and I don't really need a lot of antibodies. Wouldn't that prove I need SCIG? IVIG I major.

    I'm confused for sure.
     
  10. Daffodil

    Daffodil Senior Member

    Messages:
    4,887
    Likes:
    4,616
    @minkeygirl ...at the risk of giving a very unsatisfactory response, can you just find some way to get to KDM's office? lol
     
  11. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,643
    Left Coast
    Not an option. And I'm not one of the people who has money laying around to pay for it.

    I'm thinking to get a referral to ID and maybe get it for CMV since my igm is high.

    There's a good one on my plan so I'll move on from there.
     

See more popular forum discussions.

Share This Page