April 9, 2018 at 12:20 pm #114083
I was a healthy male age 56 and I have spent the past year and a half in and out of hospitals. My first event of full paralysis and diagnosis of GBS was in January, 2017. It was proceeded by a flu shot and two months of illness. IVIG x 5. After months of PT, I had a complete paralysis and relapse, worse than the original, in late Februay, 2017. IVIG x 5. More PT followed and in early March, 2017 I had another relapse. PT would not accept me because of the complexity of my case so I was sent home for in-home therapy. Then I had a partial relapse in late March, 2017. Plasmapheresis x 7. Thought I was getting better and then had another relapse in October, 2017. IVIG x 7 and 5 days of steroids. Months of outpatient PT. So after four hospitals and a week long visit to Mayo Clinic, Rochester, I still cannot feel my feet, I have severe exhaustion, muscle pain, cramping and crawling. I am clumsy with my gate and my speech gets slow when I am tired. Nothing in my body feels the same. I have significant weakness, as compared to before I was diagnosed and my mental health is destroyed (PTSD, suicide attempts and idealogy, depression and anxiety). My marriage has been severely affected too. Not sure who to turn to but I am hoping this forum might provide additional information or insight to help get through this life changer. The 12 neurologists that I have seen so far have no concurrment on my current health or future. Thanks for any help.April 12, 2018 at 10:22 pm #114085
Did the plasma exchange seem to work better than the IvIg? Stick with what works best. When IvIg seemed to be ineffective for me, I was switched to PE and never took IvIg again. Five days of steroids is nothing. When I started recovering after PE, I was given prednisone with dosage gradually reduced over the course of a year. At the same time, I took mycophenolate mofetil which I continued for about three years.
After a serious case of this, it would not be unusual to have permanent residuals, especially in the feet. The thing is to try to stop the active phase. If that can be done, maximum recovery will take about three years, and it likely will not be 100%. We just take it one day at a time and try to do the best we can in our new circumstances.April 19, 2018 at 1:55 pm #114090
I had a pretty nightmarish onset of my condition too (officially diagnosed CIDP, but the docs were on the fence about it for a long time – mine came on a little too slow for GBS, but fast for CIDP.) Haven’t had a relapse yet but I was only diagnosed a couple months ago. I can definitely relate as far as the way this strains a marriage, ruins mental health, and can feel terrifying and hopeless when treatments aren’t working. For me, IVIG was completely ineffective. I was desperate and at a serious low point when my brother got in touch with one of my aunts who is a medical researcher and has a different myelin-based autoimmune disease. She sent me this email (names removed):
My apologies for not sending info to you sooner. I heard from (Brother) that you may have taken a turn for the worse and that you are back in the hospital. The following are the emails I sent to him with my basic advice. I’m sure he’ll share them with you, but I wanted you to get them directly. Feel free to ask any questions you have about this.
(Brother), I will be sending Mariel some information that she can evaluate and share with her doctors. It is information that I worked out when I had my own acute autoimmune neurological attack 6 years ago (transverse myelitis). Since then I have continued to follow the literature on it. I have yet to find a neurologist that will tell you any of this. It’s all in the peer reviewed literature, but not many doctors are reading the peer reviewed literature.
The jist of it is that she needs to IMMEDIATELY cut out all dairy. The protein in cow’s milk (casein) is very similar (bio-identical) to myelin basic protein and myelin oligodendrocytes glycoprotein (both proteins that make up the myelin sheath, a protective layer around human nerve cells). This is not particularly surprising, as mammals have many similar proteins. For one or more reasons (gluten issues, antibiotic use, NSAID use, etc.) she has developed intestinal permeability (leaky gut). It is not uncommon. As a result, the milk protein she ingests is able to leak into her blood stream before it is completely chopped up into its individual amino acids (and therefore unrecognizable as coming from a cow). Because it still looks like cow protein when it hits her blood stream, her immune system goes into high alert, CORRECTLY identifying casein in her blood as a foreign invader and creating antibodies to it. This would not be such a big deal (only causing general inflammation) except that her blood brain barrier is also compromised (which can happen just from inflammation alone). As blood gets access to her nervous system, it encounters Mariel’s myelin. The casein antibodies in the blood then INCORRECTLY identify the protective layer around her nerves as an invader also, because it looks so similar to casein (that is the “autoimmune” part — your immune system attacks you).
To interrupt this vicious feedback loop, she must stop putting casein into her body and she must lower her overall inflammation. (Her C-reactive protein must be through the roof.) She should cut out gluten too (because it’s the most likely thing causing her leaky gut and it is inflammatory in and of itself), but most importantly she must stop all dairy right away. I have a five page “primer” that explains all this in more detail, and just the other day I found some recent research articles she can show her doctor if she wants to, but as there is absolutely no harm in cutting out dairy, she should do this even if I am completely wrong (which I am not).
Myelin can make repairs, and you can also repair the integrity of your gut and BBB, so there is definitely hope for her, but she must stop the autoimmune storm she is experiencing. If the doctors are running more tests, have them test her blood (and spinal fluid since they’re probably doing that anyway) for casein and gluten (gliadin) antibodies. The key is to cut out the trigger (casein) and begin to lower her overall inflammation. Speaking of which, do they (or did they) have her on steroid shots?
Then a few minutes ago I sent this with an attachment:
(Brother), immune reactions don’t work like that [He said you’ve been eating very little lately so probably not much dairy]. She can’t have ANY diary. It’s like telling someone with a peanut allergy that it’s okay if they have just a small piece of peanut. The smallest amount (especially in her current state) can restart the cycle and bring on another autoimmune attack.
Attached is the pdf of a study that shows the connections between gluten, dairy, and neuroautoimmunity. I recommend you print out a few copies and hand them to her doctors, and then just hope you have a doc with a modicum of intellectual curiosity. Here are a few of the key statements and conclusions they make that are relevant here:
“It has been shown that both celiac disease and gluten sensitivity can result in many autoimmune conditions, including type 1 diabetes, arthritis, thyroiditis, and even neuroautoimmune conditions, such as gluten ataxia and multiple sclerosis.” (4 cites listed)
“Active immune response against cow’s milk proteins plays a putative role in the pathogenesis of autoimmune disorders” (cites).
“Half the sera [blood tests] with antibodies to gliadin (gluten) also had antibody elevation to MBP (myelin basic protein) and MOG (myelin oligodendrocytes glycoprotein).”
“In these individuals . . . the consumption of wheat and milk products provides a source of wheat and milk derived peptides (small amino acid chains) that can CROSS THE GUT MUCOSA to stimulate antigen-specific immune responses both locally in the gut as well as in the periphery. In the majority of the population, the cerebellar and MOG normally remains sequestered behind the blood brain barrier (BBB). However, CNS inflammation and BBB breakdown can render the neural tissue antigens accessible to the cross-reactive antibodies and auto-reactive lymphocytes, subsequently resulting in neuroimmune disorders.” (cites)
Conclusions: “It has been demonstrated that wheat and milk proteins act as molecular mimics of cerebellar peptide and MOG.”
I’ll also mention a second article. It is a population based study showing the link between celiac/gluten sensitivity and neuropathy (Mariel has a form of neuropathy). The middle step of course is then ingesting casein. They weren’t looking at that though, they were just looking at whether people with gluten issues are more likely to have neuropathy, They found they were two and a half times more likely to have neuropathy and 2.8 times more likely to have chronic inflammatory demyelinating neuropathy. Sorry I can’t download the PDF of that one at the moment, but click the link and you can read the abstract. This is a JAMA article and it doesn’t get any more reputable than that.
JAMA Neurol. 2015 Jul;72(7):806-11. doi: 10.1001/jamaneurol.2015.0475.
Risk of Neuropathy Among 28,232 Patients With Biopsy-Verified Celiac Disease.
Now, I’ve always scoffed at the anti-gluten fad and I do love me some cheese, but as nothing else seemed to be working I went ahead and followed her advice to stop eating dairy all together and avoid gluten as much as possible (I’ll have a little if it’s in a sauce or something, but no more bread/crackers/wheat cereals).
I changed my diet right around the time that I started plasmapheresis, and started recovering almost immediately. I honestly have no idea if the diet change helped. I’m not going to claim this is a cure-all. But, I’ve continued to avoid dairy and gluten and I have continued to recover with no signs of a relapse yet while on a relatively low dose of weekly steroids. My neurologists were actually surprised at the speed and quality of my recovery – make of that what you will.
I don’t know if this will work for you or not, but it’s worth a try, right?
Best of luck to you and your spouse. Please keep hanging on. From what I’ve read, even severe cases like yours can go into remission and you can recover – perhaps not back to 100% your old self, but close to it. So don’t lose hope.January 24, 2019 at 3:30 pm #116250
Mariel, thank you for this post. It is fascinating! I’m anxious to give your suggestions a try and will report back.April 7, 2019 at 10:12 am #116328
I was diagnosed in may 2017 , first started in my feet worked its way up paralyzed me for close to 2 months,thank god it did not get to my lungs,i had bells palsy on my right side of my face so bad they thought i was gonna lose my right eye, they done a spinal tap and determent i have GBS, i couldn’t walk move my arms chew food, i felt helpless , im a guy who never really needed help in anyway but i had to break down and receive help, my daughter is a LNA , while in the hospital these younger kids who were LNA had to help me i felt so ashamed, helpless, sad cause i had to have people take care of me..I was in Portsmouth NH hospital for almost 3 weeks, 5 ivigs i got a little better they sent me to rehab, was there for about 2 weeks i had a relasps they still wanted me to just keep trying pt well it wasnt working so i demanded to go back to the hospital after about a day of bitching and so on i was finally sent to Mass General in Boston, where i had 5 more rounds of ivig after about 2 weeks i start to get some feeling back, so on to rehab again where i regained a little more strength and progress after a few weeks there i was sent home with in house pt , a visiting nurse and so on….I was still getting ivig right up until last week which made about 25ish total..I still get tired easy ,pain in my joints all over my body they come and go, ive had ringing in my ears for almost 2 years now…They say it could take up to 3 years for this to all go away,im going into my second year next month.I love alone i take care of myself, i have alot of family who live close to me i have 4 brothers and 1 sister and my mom is still with me at 87…My daughter is 26 she lives about 15 minutes away from me….My ex wife has been great, we have a awesome relationship now..If anyone has any question about this horrible disease please dont hesitate to ask me ill try to answer them as best as i can….Please take care of yourselves this disease sucks…Hopefully congress does more research about this terrible disease we need it, god bless you all and always remember your not alone…Thanks for reading my story Paul Knowles from Seabrook NH…
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