AnonymousFebruary 17, 2013 at 6:45 pm
I am not here to lead anyone down a path they do not wish to consider, but you do so at your own folly. I have posted here before and this will be my last. My son was diagnosed with CIDP, we went to numerous doctors who wanted him to be treated with IVIG, steroids, and other nasty drugs. We did not start to see healing until he was diagnosed with bartonella. Vector borne bacteria wreak havoc in the body and they are OFTEN misdiagnosed as “immune system diseases”. Our son is now off the IVIG and battling the remainder of the bartonella.
Your doctors will dismiss this. Yet the research exists and my son is living proof. We document our story at http://www.beatingbartonella.com and I will be happy to hear from anyone who wants/needs more information at firstname.lastname@example.org. I will not be checking in to see if there are questions/responses. To all the naysayers all I can say is we are doing everything we can to spread the word: if you do not get tested you will never know the truth. If you close your minds, then no one can help you. We wish you all the best of luck. We do not promise this will cover everyone, but we would be remiss if we did not do all we could to let you know.
February 17, 2013 at 7:54 pm
You posted previously as MattJ, is that correct?
There may be many infections which can trigger CIDP, and it has been reported that Bartonellosis (cat scratch disease) is one: http://jnnp.bmj.com/content/68/6/797.full
Whatever the trigger for CIDP, the CIDP must be treated, and the triggering infection, if persistent, must also be treated. I would not characterise IvIg and steroids as “nasty drugs.” They are accepted and appropriate treatments for CIDP.
AnonymousFebruary 17, 2013 at 8:25 pm
You are missing the point: CIDP is not an illness, don’t believe me, then ask your doctor what causes it. The fact is they don’t know and cannot give you a definitive answer (oh yes, the “your immune system is attacking your nervous system but we don’t know why” answer is out there). Without treating the bartonella than CIDP will not go into remission. Steroids will lower your immune system and only make it worse. I could sit here and debate with you the point, the simple fact is, if you are comfortable with your treatment and the progression of your disease than stick with your plan. However if you are frustrated with a lack of progress within your body and lack of answers from the doctors who treat you, then you owe it to yourself to rule it out. BTW I should have mentioned, the ONLY lab that can effectively test for bartonella is Galaxy labs: http://beatingbartonella.com/wp/?page_id=39. Any other lab is a waste of your time and money. (I do not work for any lab or medical office, I am merely a parent trying to spread the word).
Good luck to you, I hope everything works out for you GH.
February 17, 2013 at 11:00 pm
Excuse me? I have CIDP and I know very well that it is an illness. It’s causes are not well understood, but it is generally thought to be triggered by an infection of some kind, one of which may be Bartonellosis. If Bartonellosis is a trigger, it is rare one, according to the report to which I linked. I, and I expect most people on this site who have CIDP, do not have Bartonellosis. We do not need to be tested for Bartonellosis unless we have some symptoms which suggest it.
If I am missing your point, it is only because you have not clearly expressed one and because your understanding of CIDP seems a bit muddled. You seem to be more interested in promoting diagnosis and treatment of Bartonellosis than CIDP. That’a worthwhile objective, but thete is another web site for that disease.
If your son’s CIDP is in remission, then I am happy for him however it came about. I am also happy that his Bartonellosis has been diagnosed and is being treated. Best wishes to you all.
AnonymousFebruary 18, 2013 at 1:21 am
I don’t mean to offend you, I know how hard this is to go through. Yet I cannot stand back and let you guide others towards a conclusion that is just plain false. Yes, it is triggered by an infection, so have you been tested by a legitimate lab (Igenex or Galaxy)? Keep in mind, if it is not bartonella, then it could be lyme or another infection, something is making your immune system go crazy. My understanding is not muddled, please do not take my short approach as anything more than I am spreading information that can change someone’s life, not showing people how much I know in a forum post, if you feel this does not have anything to do with you then all the best, but do not downplay since you are not hurting me, just the people here that need real help. As for the “rarity” of bart being the trigger, your conclusion is incorrect. I have nothing to gain from this except the knowledge that others do not have to suffer like my son did, and if I can help one person then I have done what I should.
I didn’t come to debate and show who knows more. I came here to alert. Get tested, get better.
All the best to all of you, we are healing.
February 18, 2013 at 2:21 am
I am not offended, and the hard part of my CIDP is far behind me. But you are coming across as a bit of a crank by seeming to think that your particular experience with CIDP applies to most e eryone else’s condition. Many people with CIDP have posted here, an collectively we have a great deal of experience with it — how it presents, how it is treated, prognosis for recovery, and so on. We know that there is a great deal of individual variation, that there are many possible triggers, and that one treatment does not apply to all.
Most cases of CIDP are ideopathic, because the triggering infection need not be clinical in order to lead to CIDP, and because the infection is usually gone by the time CIDP is manifested. You have contributed information that Bartacella can be one of the triggers, and that is interesting and useful, but it does not explain most cases of CIDP, and probably very few.
I really don’t understand your purpose here. Your information about your particular experience with CIDP is welcome here, but if you are trying to encourage people diagnosed with CIDP to reject treatments of IvIg or steroids (I had both of these treatments, and others), then you are out of line. You have no business giving medical advice. If you were qualified to give medical advice, you would not be doing it through an internet forum.
AnonymousFebruary 18, 2013 at 3:21 am
My mistake was in returning to answer you in the first place: you can have the last word. I came here to spread the word not see who can outsmart who. I have offered no medical advice and while IVIG did help my son (it did not cure him), it is a blood product and there are always issues related to taking it. Steroids, well if you’re a child they can damage you for life, not too good for you if you’re an adult as well, especially if you are fighting off an active infection.
Pardon me for impeding on everything you thought you knew. I’m not sure why you’re debating me, maybe your defending your brilliant doctor, maybe you just enjoy the feeling of self-importance that comes with being an “expert” on a forum. I leave it to you, I didn’t come to convince, only to plant the seed of possibility for those who are looking for a real answer. That is my purpose here and it has been pretty obvious for anyone whose defenses aren’t immediately raised when what they think they know is challenged.
Please email me if you are looking for help, or keep listening to people who offer no solutions outside of your suffering. Best of luck to you all.
February 21, 2013 at 10:01 pm
February 22, 2013 at 4:14 pm
You are both right. Something triggers the immune system to respond inappropriately, the flu, samonella, the flu shot itself or as I believe leaky gut or any number of virus’s etc. I do believe that bartonella caused your son’s cidp and yes if you take care of the bartonella, in theory the cidp should go away because the trigger is removed. However in my humble opinion the duration of time it takes for the immune system to reboot itself and get back to normal after the trigger is what is in question. There is data that shows some patients do not need ivig after a year, and some as long as 7 years others never get off of it in this particular study. It just depends how long each individuals body needs to respond to the imbalance or maybe whether or not they find the cause of the trigger. You are fortunate to have found your son’s trigger and I am glad he is getting better. I think we have found our trigger and we are working on getting better and weaning off of ivig there are ups and downs and questions in between. Puberty is on both of our sides. That is the optimum chance for rebooting a young immune system. I do not know what the future holds, I just pray for the best. I pray daily that ivig will not be taken away by insurance. I think we all know that cidp is an awful auto immune disease like all the others and we all respond differently. We just have to keep learning and supporting to try to do the best for ourselves and others.
February 22, 2013 at 4:23 pm
CIDP usually does not go away when the triggering infection is gone, although it can. That is why it is labelled “chronic.” Most cases of CIDP are ideopathic, because the triggering infection is gone by the time CIDP develops, and because subclinical infections can trigger CIDP or GBS.
You must be logged in to reply to this topic.