Found Cause for MY CFS/POSSIBLY for others here also???

Discussion in 'Fibromyalgia Main Forum' started by dd, Jul 2, 2003.

  1. dd

    dd New Member

    I would strongly suggest that each of you have your immunoglobulin levels checked out if you haven't already done so. This can be done by an Immunologist or an Infectious Disease doctor...possibly even your pcp if they know anything about immune disorders.

    I am not saying by any means that this is what has caused CFS/FM for everyone here on this board. I know that there can be many causes/triggers for these DD's...car accidents, trauma, etc.

    I will share with you what I have found out in the past couple of weeks in the hopes that maybe I can help even 1 person get better or at least have some answers.

    I went to an Immunologist about a month ago because I found a dx of Granulomatous Disease on a radiology report back from 1998...mind you, I was never told about this at the time of the x-ray. I just happened to be going thru some of my old medical records and stumbled onto it. I did a search on the internet to find out what it was. I didn't find out too much information except that it is an immune disorder. I called and made an appointment with an Immunologist immediately...basically to find out more about this disease that I knew nothing about. I did come across some information on the internet about testing for immunoglobulins while I was searching out the Granulomatous Disease. At the appointment I asked the doctor about this disease and he just told me that it is very rare and not to worry about it. It was probably just scaring on my lungs from having bronchitis at the time the x-rays were taken. I told him that I had been dx'ed with CFS/FM along with some other conditions over the past couple of years and that I wanted to get to the bottom of WHY I have been so sick for the past 7 years. He hesitantly ordered the tests that I asked for saying that he was doing it for my peace of mind. Well, the IgG levels did come back abnormal and it caught the doctor's attention. He then ordered the subsets of the IgG levels...there are 4 of them. Those came back and I was low in subsets 1 and 3. Subset 1 is the main immunoglobulin that affects the immune system and subset 3 affects things such as sinus problems, bronchitis, skin infections. My doctor ran a 2nd batch of bloodwork and sent it out to a different lab just to make sure that the 1st labs were correct. Last Friday I got those results back and my subsets were even lower than the first. What does all this mean??? It means that my immune system is working in overdrive with the immunoglobulins that I do have but when they are used to fight whatever it's fighting at the time they are not replaced to normal levels because my body cannot replace them. So, I am going to be starting on IVIG...intravenous immunoglobulin thereapy...on July 10th.

    The reason that I am sharing this is because I know that we all...or most...agree that CFS/FM stems from "something" in our immune system that has gone haywire. Like I said before, this may not be the reason for your CFS/FM but it is worth having it looked into. We are all searching for answers and hoping to get better in the future. This...hopefully and God willing...will be my answer. I will keep all of you posted on how well the IVIG treatments work out. I am terrified of the treatment but if I can get any form of my old self back it will be well worth it.

    BTW, as far as the Granulomatous Disease goes, nothing showed up on the x-ray taken a couple of weeks ago. I think that me finding that dx in my old files was completely DIVINE INTERVENTION that lead me to all the rest that has transpired since then.

    I hope this at least helps 1 person in their quest to get better.

    If you have any questions I will answer them the best that I can. I am still trying to absorb and retain all this new information myself. I just felt that it is very important to have your immunoglobulins checked. It's just one more blood test...and it can't hurt to know for sure if that is the problem or not.

    Peace and Love,

    Debbie

    p.s. I forgot to mention what the name of the dx was. It is a PID (Primary Immune Deficiency) known as SCID...Severe Combined Immune Deficiency. Most of the time this is a genetic disorder but there are other causes for this. I am having my children checked in the next couple of weeks. My oldest has had pneumonia sp? 6 times since he was a baby. That is usually the fisrt clue to a PID...but most drs are clueless. For those of you that have CFS/FM that also have children with CFS/FM I would stongly recommend this blood testing.
    [This Message was Edited on 07/02/2003]
  2. Mikie

    Mikie Moderator

    I'm glad you found some answers and that the treatment works well for you. Please keep us updated.

    Love, Mikie
  3. FMayastigi

    FMayastigi New Member

    Debbie,
    I would love to know any info or resources that you may have. I actually started having my most severe problems after my gallbladder ruptured and I had to have it removed. After that I tried to go back to work and could not do it anymore. It was almost like when they took out my gallbladder my whole life changed. I am in the process of moving so I do not have that med record but I remember from the pathology report that they had mentioned granulomatous, they even thought in the very begining that I had either sarcoidosis or something very close to that. Right now I am showing most of the symptoms of Lupus but am still going thru the hell and highwater to get diagnosed. I am starting with a new PCP(it is an internal medicine group)so say a prayer. And when I see her I am going to have her refer me to a new rheumatologist. Neither of my old doctors seemed to know much about what I am going through and cared even less. As I said I am in the process of moving, plus it is just me and my 6yr old son at home during the day, so I have not been posting much, usually just have time to read a few posts and get back at it. Please feel free to email me, my email address is in my bio. Thank you so very much for any help, info or direction you can give me.
    Blessings
    Tammy
  4. Jen F

    Jen F New Member

    and let us know how it works out.

    Good for you! Good detective work.

    thanks.

    Jen F
  5. dd

    dd New Member

    Since they mentioned the Granulomatous Disease I would definitely ask your dr to check your immunoglobulin levels. I don't really know if I would trust a pcp to do the testing though. I would suggest you make an appointment with an Immunologist or an Infectious Disease dr since they are familiar with the immune system.

    I will email you tonight when I get a chance.

    Peace and Love,

    Debbie
  6. dd

    dd New Member

    For the morning crowd.
  7. pam_d

    pam_d New Member

    This is great information. After soaking up tons of information (from this site as well as other resources) I have become a pretty strong believer that many, many of us have underlying conditions that, even if they don't actually CAUSE our FM/CFS, are huge contributing factors to these DDs and the feeling that they are progressive. And I think it varies with the individual.

    One huge perpetuating factor for me was undx'd food allergies/leaky gut syndrome. Since finding out about this and treating it, my FM has steadily improved. Like you, I'm quick to say that this isn't the answer for everyone----I think there are others like me out there, but also many others for whom an undx'd thyroid condition may lurk under the surface, systemic candida, stealth infections, lyme, hypercoagulation, and the list goes on. Finding out about these things may not constitute an FM/CFS "cure" but it may go a long way to explaining the severity of symptoms and the feeling that the DD is progressing. And treating those things may allow more of us to start feeling a little better each day.

    We definitely have to be good detectives! We have to keep peeling back the layers underneath these DDs to see what we can find. I'm glad you found out about PID. There are probably others who will read your post and recognize themselves in it, and ask their doctors to run the appropriate tests.

    Thanks, Debbie, & hope you'll continue to feel better!

    Pam
    [This Message was Edited on 07/03/2003]
  8. dd

    dd New Member

    here the post that you missed.
  9. tansy

    tansy New Member

    did respond to your message on eddie 49's post. It is worth checking out, though the treatent's expensive and I'm sure many will not be able to afford it unless covered by insurance.

    Cheers

    Tansy
    [This Message was Edited on 07/05/2003]
    [This Message was Edited on 07/05/2003]