GB? Maybe Not

    • Anonymous
      November 5, 2008 at 4:39 pm

      Hi Everyone,

      I apologize in advance if this is long, but I feel compelled to share this with everyone who is affected by what appears to be chronic GB symptoms. I have not been a very active member on this site, though there were times I reached out to many with questions I had when I was feeling scared or frustrated. People here have been so kind and helpful. In turn, if I can help one person with this information, I will feel as if I’ve done something worthwhile. So, if you have some time, please read this:

      I was always a sickly kid. Chronic respiratory infections, stomach problems, and constant fatigue, though nothing was worse than when I woke up in 2003 with a tingling/burning/numbness in my feet. You all know the drill–it travels upwards, and before you know it, you’re in a hospital bed, on a bunch of machines, with a sickness you’d previously never heard of. When I learned I had GB, I was frightened but I was assured that, with treatment, it would run its course and I would be fine after some physical therapy.

      Some people are that lucky; thank God for full recoveries. This was not the case for me. I had many of the complaints that are shared on this forum all the time… sensitivity to cold–three years later my feet would still go numb. I’d wear three pairs of socks on cold days to keep the circulation going. Pins and needles in the hands. Some months I’d be fine, others the slightest exercise (carrying a laundry basket) would make my muscles weak and tingly. I’d be out of commission for days. Neck pain, nerve pain, fatigue, fatigue, fatigue. Sometime it felt as though I would relapse completely, and that scared me to death. Naturally, I communicated with my neurologists (I’ve had three, all useless). They all told me a GB relapse is nearly impossible. The worst part: they told me I had developed an irrational fear of getting sick again, so I was imagining symptoms that could not be there. I was referred to a psychiatrist, who put me on a crazy amount of pills because of my “severe depression.”

      Note: DO NOT let any doctor tell you that you are nuts. Chances are, you are not. 🙂

      A few years later, I tried another neurologist because I was finally ready to stand up for myself and say that psychiatric help was not what I needed. I don’t know what happened, but in the span of a few years, doctors were able to say, “well, we are still learning about GB…it appears as though some people still experience flare-ups even though they’re rid of the syndrome.” “Unfortunately”, there was “nothing I could do except to accept it and take an advil/neurontin combination.” I wasn’t cool with that, but what else could I do?

      Now, Let’s fast forward to the really scary part: Two months ago, I was hospitalized for the same exact symptoms I had in 2003. This time they were worse. Convinced now that it was a real GB relapse. after A million tests and a lot of “it can’t be GB again, but we can’t find anything else wrong,” I was released when I was able to sit up and move enough to make it to a wheelchair. I can’t get around. I can’t work. I have lost all dignity and independence.
      But it will not be forever! [/B]

      See, after almost 6 years of pain, I learned that GB was a mis-diagnosis. (You can mail me for more info on how I found that out). I have late stage lyme disease that set in in 2003. Please note that regular doctor testing for this is inadequate. You have to find an LLMD to get proper testing. I came up positive for tick borne illness and a LOT of co-infections. They believe I’ve had Lyme for at least 12 years.

      I am NOT IN ANY WAY saying that all of you chronic sufferers have Lyme Disease. I know how hard GB is to live with and how strangely attached we get to being a GBS survivor. Even though I didn’t have it afterall, I was told I did for years, and I had the same emotional/physical effects as everyone else on the forum. What I am saying, is that if something doesn’t seem right, or if you’re not getting concrete answers from your doctor, don’t give up. Please. Keep trying and don’t resign yourself to what they tell you you are. If I had stood up for myself and persisted, I would not be going through what I am today. And trust me, it only gets worse.

      If you question your symptoms or diagnosis, Google Lyme Disease for the heck of it. Also Google “Lyme Disease mimics Guillain Barre”. Lyme is sneaky, and is often misdiagnosed as GB, MS, Fibromyaglia, Chronic Fatigue, etc.

      Numbness, tingling, fatigue, headaches, sensitivity to medications, neck pain, joint pain, on again off again health, vertigo, vision problems, bell’s palsy, temperature sensitivity… the list goes on. All symptoms of late Lyme that are similar to chronic GB symptoms.

      If you suspect that you are still sick and are being told you’re crazy, please feel free to message me. I will do everything I can to help you find better doctors.

      Here is a generic symptoms checklist. There are good articles if you have the time to research.

      Again, this is not to scare you or negate the belief that there are chronic GB sufferers. I’m sure that’s real, too. I just wouldn’t be able to sleep at night knowing I didn’t share the information that saved my life. 6 months of IV treatment, and I expect to be walking and fully (finally) cured. I’d love for you all to be able to say that, too.

      Love, health, and best wishes to all.
      And thanks for reading.


    • Anonymous
      November 5, 2008 at 4:57 pm

      So sorry you had to go through years of suffering before getting a correct diagnosis. What you have written is very interesting information. Did they ever do the lumbar puncture to get your protein level? Good luck with your treatments and wish for a good outcome for you.

    • Anonymous
      November 5, 2008 at 8:55 pm

      Thanks, Shirley! I’ve had a few lumbar punctures since the original GBS diagnosis. I honestly don’t know much about them, except that whatever protein levels were there was enough for them to originally call it GBS. All other lps were normal.

    • Anonymous
      November 6, 2008 at 4:42 am

      Hi Sara,

      I’m glad that you finally got a diagnosis. Can I ask what a LLMD is? When I first got the symptoms (CIDP), I was convinced that it was Lyme. I’m (was) a landscaper, and an avid outdoors woman. But, of course, everything was “in my head” because I appeared healthy. It took 8 months to get diagnosed, and by then I was in a wheelchair. I had all the regular Lyme test several times. And the whole tick borne disease scan. All negative. I bought Stephen Buhner’s Healing Lyme book. It’s full of all the co-infections, and ways to treat naturally. I still wonder if it’s what I have, because the docs keep saying that I am not typical and have yet to be told what variant of CIDP I have, and now they are telling me there is Central Nervous System involvement. Fortunately, the protocol that I plan on following after my Ivig treatments is pretty much one in the same for Lyme and Cidp. Thanks again for sharing your experience. Get healthy!!


    • Anonymous
      November 6, 2008 at 2:09 pm

      Hi Dawn,

      LLMD is a Lyme Literate Doctor. There are a few good ones out there that specialize in Lyme Disease, due to the fact that it’s hard to diagnose (only a small percentage of people test positive, and the longer you have it, the harder it is to detect). Once the initial Lyme stage has moved to middle and advanced stages (neurological), most GPs are out of their leaugue.
      I’ve heard that the natural remedies are a good approach to take. It’s possible that if you have lyme, you caught it late enough that herbal suplements and homeopathic remedies aren’t stong enough. The bacteria burrows in your muscles, and after a while is even able to “shield” itself from the medicine that’s trying to attack it.
      Many people don’t know that they’ve had the disease because, like the tests, only a small percentage ever have the “bullseye” rash that comes along with Lyme. I’m not sure how extensive your Lyme testing was… I thought my Lyme doctor was crazy when he took 19 tubes of blood, but it proved to be worth it.
      I’m obviously not a doctor and am pretty new to all of this, but after reading your response, it sounds like you’re still a little unsure of the CIDP diagnosis. It’s good that the ivig treatments are similar. Maybe that will leave you happy and healthy. I really hope so! If you find that the treatment isn’t working or your neurological symptoms worsen over time, it might be worth checking out the Lyme again.
      I was an outdoor woman, too. Definitely a high risk for ticks. I know how hard it is to go from a strong, hardworking, active person to an inactive tired one. I hope you feel better soon. If you’d like to tell me where you’re from, I can help you find the name of an LLMD in your area. Even if you never call them, it’s good to know of a good doctor just in case.