Question and Vent

    • Anonymous
      December 8, 2009 at 11:05 am

      My question is Have any of you ever been perscribed high doses of antobotics as a treatment for CIDP?

      I ask this because my sister will not stop harping on this subject. She is really making me angry that she will not leave it alone. Yes I know she means well and wants only the best for Ryan but she really takes it too far.
      When Ryan was first dx with CIDP last year at this time I called all the grandparents and told them. Of course they had never heard of it and we had never heard of it. so we researched it and printed out info for them to read so they would understand wha tRyan was going through. some family read it and others didn’t want to take the time, we were told just call me and tell me what’s going on I dont want to read about it. so of course that made me furious. on the other hand researches everything and then is constantly emailing info to us and then calls us and tells us what treatment we should be doing. I tell her what we have done and what we are doing and she wants to argue the subject all teh time. she has it in her head the only treatment we should have done was high doses of antibotics. then if you want to through in IVIG or some other treatment then go ahead but antibotics is the treatment he should have gotten if we wanted him to get better. Because she read a article on it.
      I did ask our neuro about it and he said antibotics dont really work and it isn’t a protocal. so he has never ordered it. so everytime she calls she spends an hour or longer yelling (literally) at me about this course of treatment. she called last night Yelling again about chemo and why the hell would I allow this treatment.
      I told her if Ryan had cancer no one would say a thing about chemo. They all think chemo is extreme for CIDP. I got so pissed last night that I came to a conslusion. I don’t care aobut how they would handle the situation, they aren’t living with CIDP and nor do they have a clue. I am tired of arguing aobut treatments with her and I don’t want to hear no more about it. Ryan has researched chemo as a treatment for a year now and he has done the regular protocal but if there is any chance at all that the chemo could put him into remission then he was going to take it. if she didnt like it to bad.

      I know she loves him and wants him to get better and we all want the same thing and are on the same side but we have enough stress in our lives with dealing with the day to day CIDP issues that I don’t have room for the stress that she puts me through when she calls. That if arguing is all she wants to do then dont call. When she doesn’t think she has complained enough to me she calls Ryan on his cell and does it to him. which really makes him made and he tells her so too.
      I just can’t handle all the stress as it is and it has gotten to teh point that when she calls I usually let the call go to voicemail and call her when I feel like I can handle her.
      Sorry for the vent. I just get tired of family constantly complaining about something they don’t have a clue about. also if your have done the high doses of antibotic then le tme know if it worked or not plz.

    • Anonymous
      December 8, 2009 at 11:43 am

      Sorry to hear about your medellng relatives. I am just a layman about GBS (because I had it). They never could pinpoin how I got it . They really dont know how it happens. The theory goes that you catch a trickey virus that mimmics the DNA structure of your nerves. Your body immune system goes into overdrive and attacks the lining of your nerves trying to battle the intruedor. Anti biotics will not touch a virus. I think where the confusion arises is some say they had a bacterial infection in the intestines before the GBS outbreak.
      Cidp is a cronic form of GBS . It will sometimes come on slowly. The immune system is what causes the damage. I dont think it is the bacteria or the virus that is the problem all by itself. Some evan say the overuse of antibiots is what could trigger the bacteria to get” trickey”. They just dont know.
      Any way you and the doctors know more than some one who isnt walking in your shoes. Take care

    • Anonymous
      December 8, 2009 at 12:03 pm

      Thanks Ron
      I tried telling her that antibotics don’t work for viruses but she read a few clinical trials that showed it works. I say whatever to her. She even has my Dad in on it too. I get so mad at the both of them. I told her to read more about other treatmetns too so she could see that the treatments that Ryan has done thus far work too. ivig just didn’t work for Ryan. which they dont understand that. There has even been comments made that since IVIG didn’t work that maybe he doesn’t have CIDP. Because if he did then it should have worked.
      Here’s were they don’t have a clue. If they would read aobut CIDP they would relize not all treatments work for everyone. doesn’t mean they dont have the illness and just because someone printed an article about how they would use high doses of antibotics to treat CIDP doesn’t mean its going to work.
      I read that article and it was at another website and I find some of the stuff at that website seems a little wishy washy. Plus it wasn’t a clinical study it was some doctor’s opion.
      Oh well I guess I need to just get over it and when she or anyother family member makes a comment I need to either ignore it or nicely explain to them that we know they mean well but we will discuss it with our neuros and we will do what they decide.

    • December 8, 2009 at 2:25 pm

      Hi Rhomcc,
      I am sorry to hear about your relatives. They have not spent years in medical school nor have they had clinical experience with patients. If many doctors cannot adequately diagnose or properly treat such an uncommon and rare disease how can someone less than a medical expert do so.
      The only time I’ve ever heard of antibiotic being used is when Lyme Disease is the cause of the neuropathy. Lyme Disease is a bacterial infection.
      Antibiotic have their place but sometimes antibiotics can cause periphal neuropathy and may make CIDP an GBS worse.
      GBS and CIDP are inflammatory autoimmune disorders and witch doctors, acupuncture, and homeopathic doctors are useless. It’s hard to find a good medical doctor to treat CIDP, but that’s what we need.
      It ‘s hard for you, because you know your family means well, but you need all the support you can get. I hope you have it in your heart to forgive them but not give in. Is there anyway or anybody who can help them gain more knowledge about this disease?
      When things get real stressful for you maybe you could just trust the Divine Creator in the Universe to take over for awhile. You are in my prayers and I wish a complete recovery for Ryan.

    • Anonymous
      December 8, 2009 at 3:01 pm

      I understand where she is coming from as I have often thought that antibiotics and antivirals should be tried in autoimmune diseases. There is so much literature saying that many diagnosed with GBS and CIDP had an infection prior to getting their disease. Also many with CIDP have irritable bowel issues. Sometimes I think researchers go off on research tangents based on money provided by the drug companies, and they rule out simpler cheaper alternatives like antibiotics because the drug companies stand to may big money if a certain expensive drug is deemed to work in trials. I have often said to my nurse friends (I am a retired RN) that I think the day will come when a lengthy course of antibiotics will be given to anyone with a neuromuscular disorder such as CIDP or ALS. Sort of akin to the struggle that Dr. Gabe Mirkin had over convincing the medical system that heliocobacter was causing ulcers, and that antibiotics are effective with for ulcers and for rheumatoid arthritis.

    • Anonymous
      December 8, 2009 at 3:34 pm

      Neurologic lyme disease can cause symptoms that mimmick CIDP or are often mis-diagnosed as CIDP. If that is the case, then CIDP symptoms that are actually lyme disease will with resolve with high dose long term IV antibiotics.

      I have chronic lyme, and was treated for a while with Iv and oral antibiotics and was getting better, in many ways. My balance continued to deteriorate, and my reflexes did not return, so I was referred to a neurologist by my lyme dr. I went through an extensive series of testing that you are all too familiar with, and was Dx’ed with CIDP in addition to lyme.

      Scientist are finding in cases of chronic lyme disease that the lyme bacteria is continuously changing, or morphing in the body to avoid the host immune system, and one of the things that it does to to alter it’s outer surface protein. It has been recently found that one alteration of the outer surface protein has a very close reesmblence to myelin. It has been suggested in the scientific community that when this happens the immune system attacks it’s own myelin while trying to get rid of the chronic lyme.

      So, this may be why I have CIDP… I had untreated lyme disease for many years and even when treated, the bacteria had become so savy that they morphed their outer surface protein into something very similar to my myelin.

      I have known other with lyme disease and bartonella( a bacterial infection that frequently accompanies lyme) who have had CIDP symptoms that decrease and resolve with IV antibiotics.

      All this said, I’m not Ryan’s doctor or mother…. Just sharing ideas.

      Each time I see your posts I pray for Ryan and your family. I hope you find answers, and Ryan heals.


    • Anonymous
      December 8, 2009 at 3:41 pm

      Emily has had two courses of antibiotics since her CIDP symptoms started. Neither course did anything to her CIDP.

      I think you need to tell your sister that you have had ENOUGH. Tell her just what you posted here. Tell her you are stressed out enough with taking care of Ryan & just trying to LIVE that you cannot fight with her over what she thinks you should be doing.

      Tell her you are taking Ryan to see a dr & that dr, you & Ryan will make decisions TOGETHER on what to do. Tell her you appreciate her reading about CIDP & trying to offer an opinion, but that you are not interested in fighting with her anymore.

      Also tell her when she calls Ryan & goes on & on about what she thinks should be done, that it upsets him & makes him hurt worse. Tell her to research the affects of stress on people chronic illness.

      I’m sorry you have to deal with this. I think that antibiotics have a place & maybe they have helped some people. But they aren’t going to help everyone with CIDP. If it’s not a treatment you are willing to explore than tell her than & ask her to drop it.

      I made my point LONG ago with my family when they were all against Emily getting the port. I told them I am her mother & I will make the best decision I can for her. Then I added that they all had their chance to ruin their children…now it’s mine, LOL.


    • Anonymous
      December 8, 2009 at 6:39 pm

      Thank you for all of your responses. I am glad there are people who understand what I am going through. When you have a loved one who is sick it can be a very lonely.
      I did tell my sister that I can no longer argue with her about this issue. and thaT i do not want to hear anymore about it. I appreciate the fact that she did research it but I feel that she did her job with informing me about the treatment of antibotics and I did my part asking the neuro’s about it and after hearing what they had to say about that course of treatment we are no pursueing it. end of story and our decision should be respected. Her problem is, is that she can’t let it go she wants it to be done her way. But I’m Ryan’s mom and Ryan is 21 and he has the ultimate and last say on how he is handling his treatments. Heck if I wanted him to do one treatment an dhe said no I would have to repect it weather I agreed or not. But I choose to support him in his decisions. Its not always easy but you have to put yourself in his shoes.
      But thanks again I am glad that there is a place I can come and get things off my chest.

    • Anonymous
      December 9, 2009 at 4:51 am

      I don’t have any info about the antibiotics but I can TOTALLY sympathize about the relatives pushing random protocols. I’ve been having an ongoing battle with my father for 3 years now on whether I should take high doses of water-soluble Vitamin E. He believes yes as he thinks it will help my myelin regrow – I say “I ain’t taking high doses of ANYTHING” and my doctor doesn’t think it will help either. I am so sensitive to drugs I hesitate to add anything to my list, even vitamins.

      So different cure but same harassment. And the bad part is that by not following his advice he thinks I’m neglecting myself, being stubborn, and thus leads him down the path of “she doesn’t want to get well.” ARGH. I totally sympathize, I’m just glad this is about me and not my child – that would be SO much harder to slap down! My only advice would be to never patronize advice-givers… I made that mistake and am still paying for it. Take your stand and stick to it – don’t waffle back and forth or you just leave the door open for more discussions… three more years in my case. :rolleyes:

    • December 9, 2009 at 9:57 am

      OK, here is my one cents worth, not even two! We are going to the gastro in about 2 hours, so I have to be quick. But…. here goes, my wacky thought. I think Kevie has leaky gut. Many on the sight mention stomach issues, as well, headaches, fatigue, brain fog and on and on. ALL of those are symptoms of leaky gut. What could cause it? Well, some of the things, Candida, from ANTIBIOTOCS!!!! Stress, pop, aleeve/motrin and other things. Anyway. Leaky gut causes a bacteria from all of the toxins that leak out of the gut through the intestines and into the blood. So….the bacteria could cause the trigger for the immune system. Practically EVERY article you read mentions that if you can get rid of leaky gut, you can get rid of the autoimmune because there is no trigger. Complicated process, bacteria=antibiotic? which equals more fungal. So they suggest trying to get rid of the fungus (if that is the source) and the bacteria will stop because the fungus no longer causes the gut to leak. So, antibiotics could actually be the culprit, if you have leaky gut as a cause for your trigger. If you think about it, camphobacteria, e-coli, salmonella, etc are listed as possible triggers for gbs/cidp triggers, all contribute to leaky gut. Too complicated to elaborate on in short time I have now, but check out leaky gut on google. I will tell you what doc said later.

    • Anonymous
      December 9, 2009 at 12:41 pm

      Hi Dawn,
      I will be really interested to hear a report back from re:leaky gut. My husband who has CIDP has ongoing stomach issues, headaches, brain fog etc. And if I recall he started having the stomach issues about the time frame that the CIDP symptoms started.

    • Anonymous
      December 9, 2009 at 4:14 pm

      If you’d like to tell her that antibiotics don’t work, you can..

      I’ve been on antibiotics for the past 6 months (not for CIDP), but I’ve still been on them. *acne treatment*
      They haven’t done a thing for my neuropathy.

      Also, where does it say that they are effective for any sort of nerve damage?
      Some antibiotics will actually cause PN.
      (so you need to be careful with what you take)

      Chemotherapy can also cause peripheral neuropathy though.. there are people who have nerve damage as a result of cancer threatment.
      So, although its used to halt CIDP.. it can be a not so dandy thing for cancer patients who end up with damage to their peripheral nerves.

    • December 9, 2009 at 4:57 pm

      Re: Antibiotics and CIDP

      I think we need to keep an open mind about anitbiotics and neuromuscular disorders.
      A young girl with non-stop sneezing episodes appeared on the Today Show with her doctor. She was still suffering but getting better with steroids and antibiotics. She was diagnosed with PANDA I believe.
      When people have bleeding gums or gingivitis the bacteria can leak into the bloodstream and cause heart problems, diabetes and many other diseases.
      A bacteria, virus or microbe could cause CIDP, also. I don’t know.
      Maybe the key is the right antibiotic, because I don’t think fungal problems would respond to the same antibiotic as certain baterical infections.
      Maybe CIDP is a parasite infestation of some sort. Some parasites are knocked out by steroids, I think.
      I still support Rhomcc’s stand and if it was me I wouldn’t mind listening to someone else’s ideas, however being pressured by a close relative would be hard to tolerate.
      Linus Pauling endured many controversies over his Vitamin C theories and
      new ideas about certain vitamins and minerals are emerging everday.

    • Anonymous
      December 9, 2009 at 8:29 pm

      Good post Katy. It’s absolutely critical to keep an open mind when looking at treatment for these rare diseases. Basically all we know is something has triggered an autoimmune response, and that current treatments don’t cure but keep the disease from progressing. There have to be answers out there. Hubby receives $10,000 of IVIG monthly and there has to be a better answer than adding toxic drugs to his regime and him carrying on with IVIG indefinitely. Interesting to see how much literature is out there now on Fibromyalgia and antibiotic therapy and success stories as a result. Antibiotics certainly won’t cure nerve damage, but indeed they may have value if infection is suspected as having triggered the GBS or CIDP. So many people seem to have untreated low grade infections in their bodies, and of course those individuals are the ones that become septic upon being prescribed things like Immuran or Cellcept.

    • December 9, 2009 at 11:20 pm

      I have been reading literature lately that suggests fungus is the problem that starts things and subsequently causes bacteria. Apparently if you can get rid of these fungi and go through a dying of period as it is called, the bacteria goes away BECAUSE the fungus is what causes the bacteria. It mentioned that there is a period of things getting worse before they get better during this dying off stage. It just seems so logical regarding triggers and such. Why can’t we just get our fingers on this!!! I feel like we are close to something. Probably just my wishful thinking taking over the few brain cells I have left!

    • Anonymous
      December 10, 2009 at 7:42 pm

      Tell them thanks for the advice and that you will be starting the treatment soon.

      Then continue your normal treatment regimen as noted by your neuro.

      After three or four months, tell them that the Dr took him off the antibiotics because they weren’t working.

      Thank them for their concern.

      Stress beats you all up more than CIDP does.

      Take care
      Dick S

    • Anonymous
      December 12, 2009 at 5:42 pm

      Hi Rhonda, While their recommendations are sometimes off the wall, I try to educate them. I had to sit down with several individuals over the years, let them know their caring thoughts are apppreciated, but at the same time, tell them to stop the diagnosis. I even go as for as to give them my copies of the GBS Newsletter. I think after reading, even the expert Dr. Relative and Co worker stopped.

      How deep is the snow?

    • Anonymous
      December 12, 2009 at 9:03 pm

      So as to get the ‘family’ off your back? But antibiotics can and do cause as much havoc with us as help us! I was on my FOURTH course of anti-b’s before my pneumonia ended and VOILA? Two months later the neuropathy and other fun and games progressed. It ‘could’ be that the pneumonia set things off? After 14 weeks of pneumonia, in a way it’s not surprising?
      Cipro for sure, is a cause of reported neuropathies – read the fine print on side effects in the ‘prescribing information’. Many other meds, statins for example don’t help this either.
      For me? It ‘could’ be the multi-courses of anti-biotics? No way to prove it, as I was on three different kinds of anti-biotics during the pneumonia.
      It could also be environmental? Maybe, my onset occurred after the second wettest rainfall year in our region -outdoor mold abounded! Short by 2 tenths of an inch for a rain record that year! I’ve even had an evironmental engineer do an assessment of my home [I don’t recommend it as it is VERY expensive and the quality of the engineer and testors are questionable] They found nothing worthwhile to report.
      While we LIVE now in sort of controlled environments? We really do not. Unless tested for all the right things at the right times [and some of the specialised testing IS expensive as we know] it doesn’t count! I consider myself very lucky that I got the CIDP diagnosis? In that IT can be treated! Tho expensively? SOME relief for some can be found! That is much more important than alternatives really. I guess it’s up to us to learn how to make IG more available and less expensive then. That part has always been my gripe, as more and more immune issues are being discovered and relieved by IG and the blood donorship has gone down? But, demand and costs go up.
      We all know about INSURANCE and how they could change their rules at any time…where will we be then? Scares me silly.
      Sorry about this soapbox, but, it goes back to the ‘family’! Tell them to go and GIVE BLOOD! There are like 14-30 [I forget the numbers] blood ‘products’ that help US and others find relief and treatment. Get them to give, or go away! IF they want to help their family member, give blood! How hard would that be for them?
      I hope this helps even a tiny bit, tho I’m not sure that it will. But hugs and hope always!

    • Anonymous
      December 13, 2009 at 10:33 am

      I’m so sorry to hear you have to deal with well intentioned, but meddling family members. As if you (and Ryan) didn’t have enough stress already!

      My mother was a nurse and she gives me grief ALL the time about my doctor. Since she doesn’t see instant results, she thinks I should change doctors until I find the one with the magic pill! I should also mention that my mom is bipolar and a HUGE challenge in my life. Anyone that’s read any of my posts knows that I have a wonderful doctor and that I would not ever consider changing. One would think as a nurse, that she would know there are no magic pills, but her bipolar personality thinks there is. Sigh. But that is what she does (change doctors often) and that is why no one can help her. Now, whenever she tries to bring it up, I just tell her I love her but I will not discuss this with her further and I also tell her I am hanging up and then I do before she has a chance to launch into her tirade.

      Have you given your family the link to this website? My boss accepted what I told him about my struggles, but he didn’t understand. He’s been very supportive but sometimes I feel he thinks I’m taking advantage of my illness (as if there is such a thing!!!), so I gave him the link. After reading several posts, he understands better and no longer questions me.

      You KNOW you are doing the best by and with your son. I recommend you keep firm boundaries around your family and every time they call and go into any of this you tell them you love them but this is not open for discussion and you are going to hang up – then do it! It works! Even my mind confused mother has gotten it.

      You and Ryan remain in my prayers,