CFS/FM and immune deficiency

Discussion in 'Fibromyalgia Main Forum' started by GeneticDefect, Jul 4, 2003.

  1. GeneticDefect

    GeneticDefect New Member

    New to board. Just Dx with CFS/FM. Also, going through testing on my immune system. A possibility I have a primary immune deficiency (PID). I've done a lot of reading and find that people with a PID have also been Dx with CFS/FM and autoimmune disorders.

    How many of you people with CFS/FM have had your immune system checked out? I believe a Dx of CFS/FM is an umbrella diagnosis and the medical profession does not dig deeper.

    Here is a list of some immune test you may want to ask your doctor to run.
    Pneumococcus 12 serotype
    IgG subclass
    Quantitative IgM, IgA, IgG
    Good luck with getting your doctors listen and act upon these circumstances.
    ~Karen (P.S. I had mono in 1981, ongoing infections since 1988...getting worse through the years, also receive allergy shots since 1993)
    [This Message was Edited on 07/04/2003]
    [This Message was Edited on 07/04/2003]
  2. dd

    dd New Member

    a couple of days ago. Only 5 people responded to the post. I don't know if most have already had the testing done or the post just got lost because it has been so busy here lately. I certainly thought that more people would have responded though.

    I have been doing a lot of research on this myself since I have just been dx'ed with a PID on June 20th. I am IgG deficient and also deficient in subsets 1 and 3. I am scheduled to start IVIG therapy on July 10th.

    I was dx'ed with CFS/FM in 2001 after being sick for many years. Every dr I went to had no clue...take some anti-depressants and see me next month. A few of them ran some tests...just the basics...and once in a while something would come back in the low range...but most drs don't treat lab results in the low ranges. I tested + for CMV and more recently + for EBV...thus the conclusion of CFS/FM. If it weren't for me doing MY OWN homework and investigations I would probably live the rest of my life thinking that CFS/FM is what has caused all the symptoms all these years. I believe that my PID caused the symptoms of the CFS/FM...this is most likely the case for many others here that are desperately searching for answers. I had to ask my dr to test specifically for my immunoglobulins. If I hadn't asked I don't believe that it would have ever been done.

    Once I am better I am going to make it my life's work to make sure that drs know WHAT to test for when they have a CFS/FM patient. Drs need to treat the disease that is actually causing the symptoms not just the symptoms. But, in order to do that they need to be willing to do the proper testing...which I believe begins with the immune system.

    Please let us know how your testing turns out.

    Peace and Love,

  3. zggygirl

    zggygirl New Member

    I missed the first post regarding this. May have just zipped by!
    Or I may have on information overload. Either way I have the info now in my files and will talk to my doctor about it as I go down the looooong list of questions I have!

    Thanks for the post (from both of you)And I am glad you finally have some answers.
    I guess my next question would be, is it treatable I hope?
    Take Care,
  4. dd

    dd New Member

    Glad you caught this post. I will bump the one I posted back up for you to read also.

    Yes, it is treatable. Very expensive...but...treatable. I will keep you all posted with my progress...I start the infusion therapy on July please says prayers that all goes well. I hope to be able to give everyone some hope for a healthier future.

    Peace and Love,

  5. Plantscaper

    Plantscaper New Member

    It sounds like am immunologist..but could an internal medical physician do this? It could account for the immune deficency, but what about the upregulation of the immune system, as defined by most docs on CFS?

    Do you know of people who have successfully recovered from "CFS/FM", with the treatment protocol you will be on? I am all for checking out all possible leads..but don't know if this could account for all the problems we have...I know that I have developed several autoimmune diseases...

    But, much luck with your treatments..and would like to know about your progress....

  6. lucky

    lucky New Member

    My doctor suggested the ivtherapy a long time ago. However, it is a very costly treatment and is free only to cancer patients in Canada, however he was sure, I would benefit from this treatment.
    Could you pls. tell me how many treatments one needs.
    Thank you for your reply, Lucky
    [This Message was Edited on 07/04/2003]
  7. dd

    dd New Member

    Yes, I went to an Immunologist for the testing. It's a simple blood test to determine any deficiencies. I would think that an internal dr could order the testing and if it showed a deficiency could then refer you to an Immunologist for further treatment.

    I have been in contact with a few people that were first dx'ed with CFS then later found out that they had a PID and are now being treated with the IVIG. Most have said they are feeling much better except for feeling fluish for a few days after the treatments. I have not been able to find anyone that has been on the IVIG for a long time period though. The ones that I have been able to get in contact with have just begun themselves or have only had a few treatments...but they do say they feel an improvement. I would love to talk to someone that has had this treatment long term. It could be that the ones that have been on this for a while are feeling so much better that they are back enjoying life and not posting so much on how they feel. I would sure love to talk to them though...I am still searching. I will be sure to keep you all posted as to how I am doing though.

    Lucky, how many treatments depends on how fast your body uses up the IgG replacement serum. Some people get an infusion every week, some once a month and some once every 3 - 6 months. Periodic blood testing is done to determine how often.

    It is very costly. I am on Medicare because I am on SSD and they cover it 80/20. The dr office that I am going to for the treatments are going to waive my 20% due to my income level and being on SSD. I was told that most offices have sliding scale payment plans for patients since this is very expensive. Maybe you could talk with a drs office that performs this treatment to see if you could qualify for payment plan or totally waive the 20%...depending on what insurance you have. There are also foundations that I have found on the web that will help people with PID's pay for their treatments.

    Peace and Love,

  8. dd

    dd New Member

    Yes it is a very small world. Glad to see you join us on this board!!!

    I remember 'talking' to you too. We have very similar stories. I hope you get some definite answers soon...the waiting is the hardest I'm waiting for my treatment to start...less than a week now...and I am getting very NERVOUS. Talking to Carol helped ease my nerves a lot though.

    If you want to email me let me know and I will post my addy here. Good talking to you again!!!

    Peace and Love,

  9. lucky

    lucky New Member

    I was tested by an endocrinologist who was quite knowlegeable about CFS. However, as I just notice on my lab sheet, I was not tested for IgG, but hemoglobin, white blood cell count, platelet count, red blood cell count, etc. plus many minerals and other things. My test showed no abnormalities on anything I was tested for, not even my thyroid.
    I am wondering, if this igG testing is only being done by an immunologist.
    Thanks for all your info and I wish you great success with your treatment.
    Sincerely, Lucky
  10. GeneticDefect

    GeneticDefect New Member

    The blood work that was done on you sounds like a basic/routine CBC,or SMAC. TRUST ME on this one. Basic routine test may not show a hint of immune deficiency I've experienced this problem my routine blood work comes back fine so the doctors think you're crazy. Also, ironically enough I had a friend that was Dx with CVID (an immune deficiency)in 2000 and his routine blood work came back normal too. They must dig deeper into your blood work. See my posting on what test to ask for. I'm having trouble with my immunologist so I begged my new rheumie doctor to run a few more on my immune system. Still waiting results.
    [This Message was Edited on 07/05/2003]
  11. lucky

    lucky New Member

    for your reply. Can this test also be done by an endocrinologist or by my GP if I ask for it?
    And you are so right, if one does not ask for any tests, they will not be offered by any doctor, I have found this out a long time ago.
    I have had CFS/FMS for many years, so I have learned also how to approach my doctor and get certain tests done.
    And any information which I can get will help to fight this illness.
    Kind regards, Lucky
  12. GeneticDefect

    GeneticDefect New Member

    Forgive me I'm being torn between two DD. I'm finding out that there are quite a few IgG test 9depending on what they are looking for) Currently I know more about (PID) primary immune deficiency than I do CFIDS/FM. However, some symptoms overlap. So I need to keep my mouth shut and just kick back and read the board. LOL
    [This Message was Edited on 07/06/2003]
  13. Mikie

    Mikie Moderator

    Do you mind telling me which immunologist you went to? Was it one of the IMA docs? They just pulled out of my HMO. Dr. Galang is my specialist and is a good doc. Dr. Cossu is my PCP and is good but does not know a lot about our illnesses although he is willing to learn.

    I think seeing an immunologist would be a good idea. Does it matter if one is on antibiotics and antiviral meds? What specifically were the tests run? Sorry, I missed your original post too, I think. Geez, with this flare, I'm not sure of anything.

    Love, Mikie
  14. dd

    dd New Member

    Hi Mikie,

    His name is Dr. Stephen Zellner and he is in with IMA. He is very nice and willing to listen to the patient...although he does not believe in CFS or FM. He believes the symptoms are real for us but feels that there is an underlying cause for it.

    When I had my first appointment with him I was confused whether or not he actually believed me about being sick because he would say that he knew what I was going thru and how all I wanted was a dr that knew how to treat me and to get me better...then he would say that CFS and FM are both 'wastebasket' diagnoses. Of course I got defensive and told him not his next statement better not be that it is all in my head. He calmed me down and said that he believed that there was 'something' wrong and that I could call it CFS/FM but he felt that those were just empty words for a dr to put down as a dx when a dr doesn't really know what is going on. It did make sense to me and I had always thought there was more to CFS/FM than most drs are willing to admit or test for. I just got my guard up too soon with him because of my experience with other drs.

    I went in there with a list of tests that I wanted him to run on me...immunoglobulin levels, candidia, lyme, cat scratch fever and fungal infections. He didn't hesitate to do any of the testing...although I don't think that he expected anything to come back abnormal...but when they did he was very concerned and acted very quickly. He then ordered the subset levels of the IgG to see exactly where I was deficient.

    I really feel comfortable with him. I hope that you can get into see him because he does really care. I can't believe that your HMO dropped IMA from their list of drs. They are the biggest practice in town for immune problems and infectious disease. When I was calling around for an immunologist most were in IMA...there are only a few that weren't and they weren't taking new patients or had a waiting time of 4 months. Whatever you do, don't see dr Bohm...who is an endo in IMA. He is the one that dx'ed me with CFS/FM. He told me that no matter what I do I will never get better...that I should accept my dx and learn to live with my "new" life. He is the one that called me Dr. D.... for bringing him in some information about how to get better after being dx with CFS/FM. That was 2 years ago and I have gotten better since he dx'ed least I am not bedridden anymore.

    Anyway, you only asked a few questions and I somehow made this into a novel. I do hope you get to see Dr. Zellner. He is very smart and knows his business. He is also very caring. I was a boo-hooing fool the last time I saw him because I was afraid of the IVIG treatment and was concerned because my IgG levels were even lower than the first time...he hugged me and told me that everything would be alright. He even complimented me on being pro-active in my search for wellness...I've never had a dr say that before.

    He is on vacation until next Monday. Good luck and let me know if you can see him.

    Peace and Love,


    p.s. I don't know if it would matter about the AB's. I would guess that it wouldn't matter but I'm not sure. Oops, I re-read your post and realized that IMA pulled out of your HMO not the other way around.
    [This Message was Edited on 07/07/2003]
    [This Message was Edited on 07/07/2003]
    [This Message was Edited on 07/10/2003]
  15. lucky

    lucky New Member

    for your messages. I have just been tested for mycoplasma and am sure and as Mikie pointed out that we are not getting better before these underlaying viruses/bacteria/fungi etc. are cleared up, and I am positive when these are addressed properly, we will slowly get our health back. Meanwhile, we need all the help we can get to survive these illnesses.
    Hopefully my doctor will agree to book an appointment for me with an immunologist. I had so many tests done lately, i.e. for Lupus, mycoplasma, scans, x-rays which were worthwhile because at least I know why I have IBS and also I am still not satisfied with a second test for mycoplasma coming back 'inconclusive'.
    Kind regards, Lucky
    [This Message was Edited on 07/07/2003]
  16. dd

    dd New Member

    Yes, I would ask to be referred to an Immunologist. I suppose a pcp could do the bloodwork but doubt that they would know what to do witht the results should they come back abnormal. Just my opinion of pcp's though...not very high on my list. I had all the 'usual' bloodwork done with my pcp also and nothing abnormal showed up not even with my thyroid either. But, I knew that my thyroid was not functioning properly because I had all the syptoms and a family history. I finally talked an endo into doing a more extensive test on my thyroid since those of us with CFS/FM most of the time have labs come back normal even when they aren't. He ordered a thyroid stimulation test on me and wouldn't you know that my #'s were severly abnormal. He started me on Syntroid immediately. I noticed a difference in just a couple of days.

    Best of luck to you. I hope that your dr listens to you and trys to help you be referred for more answers. BTW, what was causing your IBS?

    Let us know what happens.

    Peace and Love,

  17. lucky

    lucky New Member

    Thanks again for all the valuable information. My endo also did a thyroid test:
    THYROTROPIN (SENSITIVE TSH) 1.93 0.35 - 5.00 MIU/L
    FREE THYROXINE (FREE T 4) 12 9 - 23 PMOL/L


    and I was told that my thyroid is fine. Since I have no idea how to read these results and had to rely on my doctor to explain it, I am sure he would have told me if there was a problem. He also did the normal thyroid test before I saw the endo and it also did not show any abnormalities.
    Again, I will ask him to see an immunologist and see what he has to say. My doctor is pretty good with handling CFS/FMS, not perfect, and I also have to ask for all the various tests, but usually he will agree and we get them done.
    Thanks again and kind regards, Lucky

  18. TaniaF

    TaniaF Member

    Well bumping your post up, because I'm late on reading the posts. I have had all these tests done also by an immunologist and followed by infectious disease doctors. May I ask how low your IgG levels were for you to be ordered IV treatments. My first study the IgG was low at 483 and just recently jumped up to 623. Normal levels are 694-1618. I have been taking oil of oregano off and on and then a teaspoon of Elderberry extract every night. The elderberry is an immune builder. My dr. says IV gamma globulin is only necessary when levels are in the critical zone. Are you getting sick often? My IgM was slightly low too--not sure about this one. Anyway I am to check in with them every three to four months for evaluations. Let us know how you are doing.
    Best of luck,
  19. GeneticDefect

    GeneticDefect New Member

    Your IgG numbers were interesting. You were still low on IgG in both test. I'm not low on my total IgG (1010) but I may be low on my IgGsubclass 1,2,3,4. I'm still waiting the results. Yes, I've been sick for 10+ years with URI, tired etc....

    Dr See has an article reagarding CFIDS/FM and said most people with CFIDs should get these antibody test done. Make sure you get them rechecked.

    Your IgM are your "first attack" antibodies. If they come back high you have an infection if they are low you 1)don't have an infection or 2)you have an infection but the antibodies aren't working properly.