Am I part of the "Campy" group?
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October 18, 2008 at 5:58 pm
Still trying to understand what happened to me and how I got GBS in the first place. As it turns out I was working in Dublin, Ireland about 3 weeks before the onset. Now I understand there is this Campylobacter bacteria over there that is a known trigger and I was wondering if that’s how I developed GBS. Does anybody know any of the details? Who should I talk to?
Cheers! Johnny Mac
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October 18, 2008 at 8:04 pm
Hi Johnny! That could be a possibilty but was there any vaccines given to you while you were there or shortly before, and virus’s or flu’s?
Maybe your doctor could test you for that bacteria and if it shows up then it’s possible.
Anything is possible. Not sure whom I would contact in regards to this either! Good to see you back again! Hugs
Linda H -
October 18, 2008 at 10:47 pm
[QUOTE=LindaH]Hi Johnny! That could be a possibilty but was there any vaccines given to you while you were there or shortly before, and virus’s or flu’s?
Maybe your doctor could test you for that bacteria and if it shows up then it’s possible.
Anything is possible. Not sure whom I would contact in regards to this either! Good to see you back again! Hugs
Linda H[/QUOTE]
Hi Linda,
I have a question. There sure seems to be a correlation for many who have CIDP with suspicion of having a bacterial infection like Campylobacter. Why don’t CIDP patients receive massive doses of antibiotics just on the chance that they may still have some bacteria in their systems causing faulty immune responses? I have wondered that many times. Has anyone run this by their neurologist?
Laurel -
October 18, 2008 at 11:00 pm
Hi Johnny, I suspect my GBS was Camp. induced. I had all the symptoms prior to getting GBS. My son was in the hospital having his tonsils and adnoids removed. I got sick quite suddenly while staying there with him. I was running a very high fever, had black tarry diarrhea type stools and cramping, was weak and unable to walk well, headache from heck, and general overall weakness. It did not feel like a flu at the time but I wrote it off as a flu.
Does this sound familiar? Did you get a flu shot before you went over seas? Or any other shots?
To answer your question Laurel, I am not a dr. but I was wondering if the damage is already done by the bacteria. It passes through the system and is supposedly over or almost over by the time GBS etc. show up. Would giving antibiotics at that point be a moot point? This is a question that may best be answered by someone in the medical profession. With Hope may have some thoughts on this.
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October 19, 2008 at 12:20 am
[QUOTE=jan’83]Hi Johnny, I suspect my GBS was Camp. induced. I had all the symptoms prior to getting GBS. My son was in the hospital having his tonsils and adnoids removed. I got sick quite suddenly while staying there with him. I was running a very high fever, had black tarry diarrhea type stools and cramping, was weak and unable to walk well, headache from heck, and general overall weakness. It did not feel like a flu at the time but I wrote it off as a flu.
Does this sound familiar? Did you get a flu shot before you went over seas? Or any other shots?
To answer your question Laurel, I am not a dr. but I was wondering if the damage is already done by the bacteria. It passes through the system and is supposedly over or almost over by the time GBS etc. show up. Would giving antibiotics at that point be a moot point? This is a question that may best be answered by someone in the medical profession. With Hope may have some thoughts on this.[/QUOTE]
Hi Canada,
I have thought of that, but I still think there is a chance of residual bacteria hanging around. We have two theories that hubby and I toss around about what precipitated his CIDP 1) he had a serious infection after he had kidney stones 2) he had weakened grip and had carpal tunnel surgery resulting in wasting and atrophy of his rt. hand and forearm after the surgery. Both occurred in the time frame of his hand atrophy.
Laurel -
October 19, 2008 at 3:31 pm
Hi everybody and thanks for the discussion. What was weird about me is I don’t really remember being sick before the onset. I remember having a slightly upset stomach on my way back from Ireland and Wendy said I seemed a little off, but that was it.
Which brings me to question number two. Does the medical industry pay attention to our discussions? It seems like there is such a wealth of information passing between us. And it seems like the more rare the disease/syndrom the more the patient becomes the expert than the physicians.
Cheers! Johnny Mac -
October 20, 2008 at 4:47 am
I have never been tested for Pylori but I do recall having black tarry stools in my system, several years back and got sick feeling. Like I picked up a virus and the doctor I saw for it never really did anything. Just called it IBS. Makes me wonder about that IBS. For I still keep that upset stomach and have told my husband that I am positive there is bacteria lurking in my body. And it is quite possible. Maybe a bacteria resistant strain causing antiboitics to not work. Possible! For I have seen antibiotics alot since I had those problems back then.
This might be something to ask your doctor about! They might be able to explain why they are not giving antibiotics. Could be that the virus itself is now over with but did damage and there is not much more that can done. But then again anything could be wrong! CIDP can have many causes! But you are right. All that we have told our medical professionals there should be a reason for it somewhere.
But then I sit back and think and also wonder how many of us never get reported. Just diagnosed and treated. Not contacting anybody or letting the Science part know our symptoms and reasons. I bet we have more with CIDP or GBS that have not even gotten reported. Making the number of us in science lower!
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