off the cuff idea

    • March 27, 2011 at 1:02 pm

      So, as you know, I am obsessed with the connection of gut issues and cidp, for that matter, all autoimmunes. Anyway, Guskno raised topic on this very interesting new virus. It all is just so interconnected, whether it is lg, xmrv, aids, h-pylori, whatever. We use all of these drugs, probiotics etc. to kill each of these individual diseases. If you think about, the statement that once you have one autoimmune you get another, maybe it is just that the inherrant infection that is never detected just keeps screwing up one vital system after another. Starts at the top, thyroid, stomach,kidneys liver and on and on. Also, if you think about it, some members go into remission with ivig, well, maybe their virus left their body and the ivig had nothing to do wih it. Others on ivig do not go into remission, do they still have some underlying virus. Some get results with steroids, did the steroids arrest the mystery virus? Some get it back after a while.

      It would be interesting to me to know if Ryan or Pam H who tried the cytoxan had any evidence of past mono or herpes or h-pylori, or what ever virus you want to say, if so, perhaps the cytoxan is what they needed to kill whatever virus which in turn stopped the cidp. I wonder if Alice had any other virus’s? I wonder if according to other sct people on the site the procedure is working for many autoimmunes why the docs keep treating the conditions individually? It seems like the focus doesn’t have to be on individual disease such as cidp, ra, ms, they all must be caused by some underlying virus. I especially think of Selahs mom when I think about this, there was so much focus on the hand foot mouth disease virus she had. I especially think of Kev, we have been sick for so long, the sinus issues, fevers etc?

      We can only keep taking these antibiotics for so long to stop the staph, the h-pylori etc. Is some virus making us more suseptible to these bacterial infections? There has to be some underlying virus!! I wonder if aids anti virals would help. I wonder if their implications are equal to cytoxan or less dangerous or worse? Why do we even treat it as cidp. If you think about it, the ivig, not really positively know how it works, boosts the immune system w/the antibodies, when used for pid people it helps to keep them from being sick, maybe the ivig does act as a barrier on top of the myelin sheath, or maybe it helps to curb this mystery virus. It seems as though the only way to arrest theese diseases is to kill the virus with the strongest poison. Which unfortunatley hold its own risks!! Why is everything so hard? Why can’t God just give us the answer? I pray for all of us!!

    • Anonymous
      March 27, 2011 at 1:24 pm

      I too am now starting to think more and more about these intestinal/gut issues. The specialist I saw says that she has seen a trend on stomach/gut viruses cohabitatting with auto immune disorders. She said if you have auto immune disorder, there is a 90% chance there is a gut virus hidden somewhere. The challenge is finding a doctor who doesn’t dismiss this as a coinsidence and really look at it as a causal virus. Could it be a root in the CIDP tree????
      I am going to see her in 2 weeks and will talk to her about this in depth. I will also mention the sinus infection you and your son tested positive for along with the gut virus you also tested for. The one that starts with an H. I’m curious about that one and tired of this bloating. I also get the sweating and feverish feeling. Especially at night. From the stomach up, I am burning up and sweating, but my legs are cold????
      I just want a good, comfortable nights sleep!!!! Will I ever have one of those again????
      I will keep you all posted. Thanks for all the info!

    • Anonymous
      March 28, 2011 at 12:47 pm

      I am also interested in hearing about your visit to doctor in regards to gut questions. I’ve had IBS, divirticulitus (sp) and other such troubles. My sister has gone on a mostly gluten-free diet and feels so much better (she does not have CIDP) and I try it from time to time but usually forget and eat something I shouldn’t. Also, feel that I am hurting in one area I want to feel good in another and eat what I want (spoiling myself, in more ways than one possibly-brat that I am!) Anyway, if this could be an answer to our CIDP issues, I recon I could buckle down and really follow the gluten-free diet. Please keep us informed as you learn anything. THANKS!

    • Anonymous
      March 28, 2011 at 12:48 pm

      sorry GUSKNO, I hate it that I have to try to remember names cuz when you hit “reply” at the other pages go away. 😮

    • Anonymous
      March 28, 2011 at 2:02 pm

      I have never had any issues with my stomach area or eating habits, even though to be honest I do eat carbs & ndon’t always eat as healthy as I should. Nor have I ever had mono or herpes or h-pylori that I know of. I did have severe ecsema & allergies until around age 20 (both autoimmune,) but didn’t get CIDP until age 48. The neuros believe I got CIDP from walking pneumonia I had had all winter in 2002. After my 9 months of cytoxan I didn’t get a cold or sore throat until this fall, which was 8 1/2 years. But with two little grandchildren now, I seem to pick up more bugs. You do raise some interesting questions though…

    • March 28, 2011 at 2:41 pm

      your comment that your docs think you got cidp after walking pneumonia kind of substantiates what i am trying to articulate. kev’s cidp was either from recirrent strep (virus) bee stings at one time or even anesteasia was a suggestion. the point being, these virus’s stay within the body and don’t go away resulting in cidp or whatever autoimmune you get on the craps wheel. i really think the cytoxan is what was needed to kill the virus. the people who do go into remission with ivig maybe are able to rid themselves of the virus just w/the ivig, others have a more persistant virus. who knows, i am just a stupid toilet bowl cleaning college educated stay at home mom trying to come up with an answer to help my poor kid. as the saying goes, God only helps those who help themselves. i know, iam whining, i am just so sick of kev always feelinglike a 90 y/o man

    • Anonymous
      March 28, 2011 at 5:00 pm

      I did have a viral infection for almost 3 months before I came down with CIDP. The neuros were unable to stop my CIDP with any of the usual treatments, but the cytoxan did arrest it. So your theory is that it could have been possible that my body never was able to rid itself of the virus that brought about my CIDP, & that could have made me refractory to all of the usual treatments for CIDP. Then the cytoxan finally killed off the virus that caused all of the problems. Interesting theory, it could well be possible, Dawn…

    • March 28, 2011 at 5:14 pm

      Do you really mean it that you think it is a viable theory? I am not being rude or mean, I just really want to know, I feel like I am crazy always thinking these things up, but if you think about it, the one constant is that whether it is gbs or cidp, many possible causes are salmonella, flu shots (a viral introduction) strep, whatever, it just seems so simple and basic. I am going to start investigating the side affects of antivirals and always keep that cytoxan in the background if he does not get rid of this after puberty. That statement in itself substantiates the fact that the virus could be irradicated and cidp arrests, ie they say children have the best chance of recovering because of puberty. Perhaps because the infantile immune system respectively compared to a older person still can have time to “learn” the virus and get rid of it.

    • Anonymous
      March 29, 2011 at 5:56 am

      I believe that there is just so much doctors don’t know at this point. There isn’t a lot of money put into research for “orphan diseases” because it doesn’t affect a lot of people, compared to illnesses such as MS. I seriously believe that both GBS & CIDP are most often caused by some sort of virus, maybe in GBS the virus has run its course, thus the better recovery. But it is possible in CIDP that the virus that initially caused the problem is still in the system? That could be why it is a chronic illness? I was just a teacher, but I am saying that you might have something here. I am so sorry that your son has to go through all of this crap, it is bad enough at my age. Give him my blessings, I hope he goes into remission soon…

    • Anonymous
      March 29, 2011 at 2:36 pm

      Thanks for looking at the big picture. I think all of us together can come up with the answer faster than some doctor/scientest who hasn’t experienced what we have. I liked you comment about God helping those who help themselves. How about this theory:
      We were give these wonderful bodies that do heal themselves when treated properly…given what they need to repair. Instead of looking for an anti-viral, why not give the body what it needs. When you look at how each of us came down with GBS/CIDP, it seems many had an illness/infection and were run down. The part of the body that fights infection is our white blood cells. When they do not have what they need to fight it off, the infections win. As I fought off my second bout of GBS, I took 15-20 grams of vitamin C and my body used ever bit of it. (Otherwise I would have been running to the bathroom – since I could only crawl, that was not a good idea!! But I Knew that it was working, because of not having any bowel intolerance.) The literature says Not to stimulate your immune system..I said Hogwash and did the opposite. I also did reflexology of my hands and feet…very much like acupuncture/acupressure. I took supplements like zinc and certain herbs to fight infection. Then I let the body heal itself. And it did. I would habe added Olive Leaf extract because that fights most bacterial, viral, fungal, and parasites. We were given the tools/foods to stay healthy…but we have been conditioned to look for a magic bullet from the pharmaceutical companies. Finally Dr. Oz is giving credibility to what wholistic people have known for years…the “old ways” work. So I think you are on the right path. But my suggestion would be to strengthen the body and let God’s creation fix itself.
      In the past i have found that if the C wasn’t working, I wasn’t taking enough. The same goes for Olive Leaf. People take one capsule and say it is not working…..yet take triple the amount of what the FDA approves for pain relievers and think nothing of it. I vote for the stuff Without side effects.

    • March 29, 2011 at 4:40 pm

      Hi Carolyn,
      I whole heartedly agree with you about the “natural” way. We spend about $350 a month on pro-pre biotics everything from oxen bile to human probiotics and any plant you can think of in between. We have tested every level form c to d to magnesium, via hair, saliva and blood. The homeopathic docs (dans doc) are so full of knowledge. They understand the complexity of the body as a whole and how the slightest misalignment starts the ball rolling for each system to start failing in its sequential ordr. It is mind blowing how they explain the relativity of each deficiency to each anamoly. Unfortunately western medicine is so focused on compartmentalizing each ilness and each specialty. In my opinion this is how so many things get missed! If we were 18 we’d do the worms. The problem is it takes so long and so many other defisicts to other systems happen. The antiviral thing is something I am just researching, presently I hold it in the same category of cytoxan, rituxan and the whole stem cell protocol…possible necessities down the road that hold serious risks and side effects to an imature immune system, but still may be our only saving grace or option in the end. For now
      I am sticking with the multitude of natural products and of course our current saving grace ivig, checking out that dr. Mercola guy and praying to God to give me the courage and brain to keep searching. That is all I can do so that is my mission!! btw, I have to admitt, other than the food allergy/sensitivities that came up in our eliza results, I could do beyond….much better regarding diet and the crap we put in our body. Diet pop being the biggest culprit.
      I do cook homemade almost every day, no processed, but I do buy snacks…

    • Anonymous
      March 29, 2011 at 10:45 pm

      You are doing so many “right” things that it must be frustrating to still be needing IVIG for your son. When I had GBS the first tme, I was frightened as I saw myself slowly getting paralyzed. I tried everything. In frustration I knew it was beyond me. So I prayed and asked God to help. But how was he going to let me know what I was missing. I asked a friend to help by using a pendulum – my gold scuba diver charm on a necklace. I could not hold it, because my tingling made it impossible to use. I asked the questions while she held it. We went through every supplement I could think of – asking “IS this what I need to stop the GBS?” It did not move much until I mentioned Adrenal extract. Then it went crazy. YES YES YES. swinging wildly. I then started asking, “Is two enough? 4? 6? 8? etc….I settled at 12. I asked how to divide it up and with food or not. I tried 6 the first day and it didn’t kill me. Nine the next day…finally 12 the following day. That is when the GBS turned around. The blood pressure went down and I could see a difference after several days. When I told my doctor what I did and the results, he said that he would have given me Adrenals by intravenous if I had gotten hospitalized. The reason I needed 12 was that the body had trouble absorbing it. That was in 1986 and I have used the pendulum since then to help me make decisions. Especially for what my body is lacking and how much.
      I have taught others to use the pendulum and we compare answers as to what their body is lacking. The answers are the same. So it is not a random science. We can think of it as God answering our requests for help. But you have to be accurate in your wording your question.
      You might want to try this…what can it hurt. You have to get better answers than some of these doctors are telling us. At least more open-minded!

    • Anonymous
      March 30, 2011 at 12:07 am

      Hi everyone,
      I wanted to let you all know that I went to another doctor today. She is a PCP with a sub specialty in preventative medicine. She ran some blood work last week and tested my adrenal glands, because of my severe chronic fatigue. She said that they are functioning ridiculously low and are not creating cortisol. I also found out that my pituitary gland is severely sluggish too. These 2, especially the adrenals, pay a huge role in controlling inflammation in the body, along with depression, weight gain, fatigue and so on. For any of you feeling fatigued or if you have been diagnosed with CFS, please have your adrenals checked! IVIG can effect their productivity, along with a lot of the narcotics we rely on for pain management. At one time, they will be effected. I am hoping that with these new results, my endocrinologist will eat his words from a few months ago when he told me that he didn’t see any reason for testing my adrenals, as my fatigue was caused by depression! It is so insulting when you go to a physician to try to get answers and all you get is the brush off!! His nurse called me today after he read the results of the blood test he refused to do on me because he needs to run a 24 hour adrenal challenge test.
      I am seeing the specialist that told me about XMRV at the end of April. I will post her thoughts and testing when available.
      Those of us with severe autoimmune diseases have to be so vigilant when it comes to testing every part of our bodies from our organs, to our NCV’s and EMG’s!!! Since the doctors would not perform the adrenal test, I had to go to a new doctor, request the test and pay for it out of pocket. Only to find out that my hunch was right. I’m so sick of being told I have depression!!! I know I’m depressed, I’m sick!!!! I assure you that I was not depressed before my illness took my ability to get out of bed!!! I can deal with the pain. I am so used to it that it doesn’t bother my so much. What kills me is this fatigue that causes me to sleep for days at a time and makes taking a shower a chore! If I can beat the fatigue, I will be able o be a mother and wife again. That’s all I want. To be awake enough to watch my kids grow. It just makes me so mad when a physician can so easily tell me it’s in my head and wash his ands of me!!! Leave my head to my shrink! He should have tested my adrenals in October when I begged him to. What a jerk!!!!
      If anyone wants to test your adrenals, request a simple blood test for your cortisol total and DHEA sulfate. If they come back abnormal, you have proof of why you are chronically fatigued. Your PCP can run this test (to keep the cost down) once interpreted, you will be sent for treatment. It is just a test that is not commonly run, so ask for it……
      Take care:)

    • March 30, 2011 at 1:30 am

      Hi florencia, we went to a peds endocr back in december, I was thinking addison’s disease or cushings, adrenal insufficiency Turns out adrenal and thyroid were ok, however we had titers checked and we were ok w/adrenal, however thyroid antibodies were positive. in english that means your thyroid blood numbers are ok now but we need to check every six months or so???? about your cortisol levels, i am sure you know this, but just in case, the levels are most accurate in the early am, 7 or so, 8 the latest. the dans doc brought out a sketch of the human body and started at the mouth and worked his way down system by system and how they fail in the sequential order based on the specific results. stomach is the first, (leaky gut problems, allergies etc. ) once the gut goes, largest part of immune system the adrenal, kidneys liver ….. it is amazing how he explained it it was such clarity i can’t even tell you good luck at your next appointments, i am so glad you are fighting for you and your family. keep up the good fight

    • Anonymous
      March 30, 2011 at 9:05 am

      Pam, Dawn
      I think the answer is somewher in this posting. RE: Viral attack=nerve cell destruction
      A virus or bacteria lies dormant and something triggers it or your immune system is weakened or goes into overdrive fighting it own nerve cells in the confusion, due to unrecognizable signature.
      Well said..
      I read in the Duluth Tribune today about 43 cluster areas in the U.S. that the government is going to study for increased cancer, autoimmune etc. due to a variety of causes. Imagine that.

      Thanks for asking the big questions!


      your comment that your docs think you got cidp after walking pneumonia kind of substantiates what i am trying to articulate. kev’s cidp was either from recirrent strep (virus) bee stings at one time or even anesteasia was a suggestion. the point being, these virus’s stay within the body and don’t go away resulting in cidp or whatever autoimmune you get on the craps wheel. i really think the cytoxan is what was needed to kill the virus. the people who do go into remission with ivig maybe are able to rid themselves of the virus just w/the ivig, others have a more persistant virus. who knows, i am just a stupid toilet bowl cleaning college educated stay at home mom trying to come up with an answer to help my poor kid. as the saying goes, God only helps those who help themselves. i know, iam whining, i am just so sick of kev always feelinglike a 90 y/o man

    • Anonymous
      March 30, 2011 at 12:29 pm

      Funny how my post was explaining how I figured out that adrenals would help turn around my GBS and then Florencia tells how her hunch had her get her adrenals tested. We have to listen to our hunches. Stress wears down the adrenals and most of us were under incredible stress before we got GBS. Florencia used medical tests to confirm it and I used a pendulum…25 years ago. Some of my earliest posts said that adrenals worked for me. Lowered my blood pressure, got rid of the fatigue, and turned my GBS around. If you decide to take adrenal extract, buy the kind from New Zealand or Australia. I called the companies who process it and they told me that. But taking one tablet usually won’t do the trick. It is ground up adrenal glands from cows and then they extract the water to make it a concentrate. Not sure what the doctors use. But I do know my doctor was going to put me on an IV of it if I were hospitalized. Luckily I figured it out before that happened.
      Often test results are incorrect. I go by symptoms. I had been in FL for a week and turned as brown as a piece of furniture. Not a pretty sight with blonde hair. But that was a clue that my adrenals weren’t working.
      Good luck to all.