Immune deficient/Autoimmune?

Discussion in 'Fibromyalgia Main Forum' started by wendysj, Jan 19, 2010.

  1. wendysj

    wendysj New Member

    Hello All:

    I have really had a bad 10 days-two weeks. I've really been wondering about the auto-immune disease (RA) and immune deficient CFS/FM... How could one body have both? It seems like they would negate each other. It has really been bugging me lately.

    All thoughts are welcome.

    Hope you are all having a more energetic, less painful week!
  2. TigerLilea

    TigerLilea Active Member

    I forget now which doctor said this, however, he stated that if CFS were an immune deficiency as some believe, then we would be at extreme risk for dieing from infections and even something as simple as a cold.
    [This Message was Edited on 01/19/2010]
  3. spacee

    spacee Member

    I will just pass along come of CFS research Dr. Cheney's thoughts.

    One is that the CFS immune system is upregulated not deficient. It works overtime.

    He also says that while we can have autoimmune antibodies, he has never seen (in his practice) a standard CFS go into Lupus.

    He didn't say about RA but I got the impression that he meant all autoimmune.

    That said. I have antibodies to Sjogren's Syndrome and I was diagnosed as CFS at his clinic by Dr. Lapp when they were together.

    Those are thoughts of docs and personal experience...just sorta reporting not really thoughts about how it all works.

    So sorry for your bad time. Hope you get over this flare!!

  4. AuntTammie

    AuntTammie New Member

    actually stands for immune "dysfunction" not understanding of it is that the immune system is constantly turned on and also attacking things that it probably should not be, and as this is the case, it is also getting worn out and stretched thin, which makes it harder for it to successfully fight off anything
  5. wendysj

    wendysj New Member


    You all never let me down... I had completely forgotten the "dysfunction" not deficiency. You would think after having this 6 years, I would remember that.

    I can honestly say that I have not had a true "cold" or "virus" in years. There have been times when I felt "icky" on top of my normal fatigue, pain and stiffness. Nothing that has been classic flu/cold symptoms that sent me to the GP.

    I guess that means I'm either very lucky, or my immune system is always on hyper-drive. I don't think - in the light of all my surgeries and chronic illnesses - I'm able to imagine myself as "lucky".

    Thank you for your thoughts and straightening out my thoughts.

  6. skeptik2

    skeptik2 Member

    Remember, when the immune system is in overdrive, it pumps out
    all these cytokines and that alone can cause us to feel sooooo sick!

    Besides the dysfunction, the natural killer cells may be affected by
    those who test positive for XMRV, so that is a 'deficiency' problem.

    I hope you feel better real soon...

  7. equanimous

    equanimous New Member

    Hi jam,

    Was just wondering how much LDN you're taking. I've been on 1.5 mg for a little over a year now, and it has definitely helped me, but I'm thinking I should try increasing my dose now. I'm just a little hesitant because when I tried that before, it made me feel worse, not better. Thanks.

  8. equanimous

    equanimous New Member

    Another way to look at this is that the immune system in those with CFIDS is both deficient and overactive. This can be accounted for by the condition of TH2 dominance where TH2 helper cells are more active than they should be and TH1 helper cells are underactive. This means that you will tend to "over-respond to toxins, allergens, normal bacteria and parasites, and under-respond to viruses, yeast, cancer and intracellular bacteria." I think this explains why many of go for so long without say getting a cold or whatever other bug is going around, because the symptoms that would accompany those afflictions are absent due to under-response of the immune system. This is why low-dose naltrexone can be helpful for those with CFIDS as it balances the TH2/TH1 ratio.

    Also, according to, TH2 dominance can also be characteristic of rheumatoid arthritis, who "do not make new T-cells as readily as they should."
  9. wendysj

    wendysj New Member

    Hi Equanimous!

    Thank you for your comments! It has cleared so many things I think about. I tell my family all the time "I think I'm getting the flu". Well, it's never the flu, it's just a bad flare coming on. I can't remember the last time I had a cold/flu. It's so weird!

    I am going to read up on the information on Diagnose-Me. Thank you for your input.

    Hope you're feeling well.
  10. Bunchy

    Bunchy New Member

    Two questions:

    How long does the insomnia last from LDN? Does it wear off after a few days?

    What do you take to "keep things moving?" I'm having a problem with that lately and want something natural to help (and not expensive)


    Love Bunchy x
  11. Bunchy

    Bunchy New Member

    I haven't yet tried LDN because the doc that suggested it said it would make my combo of sleep meds ineffective and I couldn't cope with that.

    I desperatley *NEED* my sleep otherwise I really pay for it :(

    So are you saying if you take it earlier, it wouldn't affect sleep meds such as Lorazepam and stop them from working? Can you take LDN in the morning instead so it doesn't affect your sleep?

    Thanks for the info on the "bowel issues" ;)

    May I ask how many capsules of Psyllium you need to take to help "keep things moving" and do you need the Mag Citrate as well as that?

    I ask because here in the UK these supps are quite expensive.

    I can get stuff sent from - do you know if they sell these things cheaper?

    Love Bunchy x

    PS Glad the LDN is helping you - which symptoms has it helped most with?
  12. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    It is both. Natural Killer cells and some of the T Cells are directly affected by XMRV. Previous studies showed that in CFS, NK cells are low and they aren't working normally. (sorry, some of you others who have kept up better and have mental capacity to understand the complexity know a lot more about the T Cell problems.) But the cytokines are elevated.

    If I remember correctly, Klimas said the one leads to the other. Because NK cells are low, cytokines are being pumped out to compensate. (Again, relying on memory. I may be wrong or have misunderstood.)

    Also, after I had the virus that stayed or the multiple viruses in 2004 (or was it 2003), I didn't get a cold or flu for five years. Then, my husband caught H1N1 in October 2009. I came down with the symptoms four days after his started. I had a week and a half of full flu. Honestly, it wasn't the worse flu I have ever had. But, about a week after flu symptoms had started to lift, I went into a full CFS relapse. I had been overly active (I knew better), but I think the flu had the bigger affect. I was in the bed for a week and a half with CFS symptoms. Then, I gradually started to recover from that relapse.

  13. wendysj

    wendysj New Member

    Hi Tina,

    Thanks for your input. I will do some researching on the T cells. Honestly, I'm a little lazy when it comes to this research. It seems so far over my head and confusing with all my other illnesses.

    I'm sorry to hear you had H1N1. That had to be rough but sliding into a relapse would have been the straw the broke the camel's back for me. I'm happy to hear you are feeling better.

    Thanks again for directing me in my search for answers!
  14. equanimous

    equanimous New Member

    Hi Jam,

    I'm taking the LDN for CFIDS. I have little doubt that it has helped to lessen whatever inflammatory processes are going on in my body as I was able to cut my daily dose of hydrocortisone from 15 mg down to 2.5 mg after being on the LDN for less than a month. In fact, I had to cut back on the hydrocortisone as I was starting to feel the effects of excessive cortisol that weren't present previous to the LDN.

    I think after reading in several places the anecdotal information that PWCs do better at a lower dose, I'm gonna just stay at 1.5mg for now. If it ain't broke, don't fix it. Especially where I'm doing both chelation and the methylation treatment right now, I don't really need to add another change into the picture.

    Thanks for your response!
  15. equanimous

    equanimous New Member

    Hi Jam,

    I was wondering how much DHEA you take and what brand. I'm taking pregnenolone, but I've had trouble with DHEA in the past. I got a prescription for extended-release DHEA, but I haven't tried it yet.

    I hope the LDN continues to work well for you. Thanks,

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