I have been obviously really thinking a lot about why I bothered to try to find a collaborator and also about why I would vent it publicly as I did.
Doing a Steve Jobs and being brutally frank, I think the problem is I am having so much loss of time from the Multiple Sclerosis, that I didn't trust my sheer will power to "get 'er done". Normally in the past, I was always sure I could put in the hours necessary.
Yesterday I started the day strong as I wrote about, but after about 4 hours the malaise started and the rest of the day was lost. I ended up sleeping by 3pm (after eating and a couple hours of trying to fight the malaise and failing to get any productive work done) and woke up 8pm still in a malaise and even my eyes hurt (this seems to always get worse after I exercise hard, perhaps the inflammation of the exercise stirs up the autoimmunity). Managed to get some work done (reviewing the math for one of my recent epiphanies) but my gut and head are hurting and it just isn't the same as when I was healthy. Normally I would have already finished the white paper and have been doing some coding all in this day. Now it takes me days just to complete what would have taken me only a day.
Some days I feel no ill effects and I perform basically at the same level as I did when I was healthy. But I don't get enough of these days.
I have decided to just push on and struggle and see how much work I complete by the end of this month. If I find that the M.S. is making it unlikely that I can complete the project in any reasonable # of months, then I would strongly consider accepting an angel investor who can fund me to go to Australia to get fecal transplants.
Note I know my illness is correlated to my gut, because the worst inflammation and autoimmunity symptoms always start right after I eat. It is so predictable.
http://www.thisisms.com/forum/general-discussion-f1/topic20297.htmlFecal Microbiota Transplantation (FMT) in Multiple Sclerosis (MS)
T.J. Borody, S.M. Leis, J.L. Campbell, M. Torres, A. Nowak, , Centre for
Digestive Diseases, Five Dock, New South Wales, AUSTRALIA;
ABSTRACT BODY:
Purpose: Recent evidence implicates the GI microbiota in the progression of neurological diseases such as Parkinsons Disease 1, Multiple Sclerosis and Myasthenia Gravis 2. We report three patients with MS diagnoses who achieved durable symptom reversal with FMT for constipation.
Methods: Case study observations on three MS cases
Results:
Case 1: A 30 yr old male with constipation, vertigo and impaired concentration and a concomitant history of MS and trigeminal neuralgia. Neurological symptoms included severe leg weakness and he required a wheelchair and an indwelling urinary catheter. Previous failed treatments included Mexiletine,
Tryptanol and 9-interferon. The patient underwent 5 FMT infusions for his constipation, with its complete resolution. Interestingly his MS also progressively improved, regaining the ability to walk and facilitating the removal of his catheter. Initially seen as a ‘remission’, the patient remains well 15 yrs post-FMT without relapse.
Case 2: A 29 yr old wheelchair-bound male with ‘atypical MS’ diagnosis and severe, chronic constipation. He reported parasthesia and leg muscle weakness. The patient received 10 days of FMT infusions which resolved his constipation. He also noted progressive improvement in neurological symptoms, regaining the
ability to walk following slow resolution of leg parasthesia. Three years on the patient maintains normal motor, urinary and GI function.
Case 3: An 80 yr old female presented with severe chronic constipation, proctalgia fugax and severe muscular weakness resulting in difficulty walking, diagnosed as ‘atypical’ MS. She received 5 FMT infusions with rapid improvement of constipation and increased energy levels. At eight months she reported completere solution of bowel symptoms and neurological improvement, now walking long distances unassisted. Two years post-FMT, the patient was asymptomatic.
Conclusion: We report reversal of major neurological symptoms in three patients after FMT for their underlying GI symptoms. As MS can follow a relapsing-remitting course, this unexpected discovery was not reported until considerable time had passed to confirm prolonged remission. It is tempting to speculate that FMT achieved eradication of an occult GI pathogen driving MS symptoms.
Our finding that FMT can reverse MS-like symptoms suggests a GI infection underpinning these disorders. It is hoped that such serendipitous findings may encourage a new direction in neurological research.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3868025/Multiple sclerosis
An infectious cause of multiple sclerosis (MS) has been speculated, though the potential for gastrointestinal pathogens to exert neurological effects remotely (as seen with many Clostridium species) has not been considered likely. In 2011, Borody et al.[38] reported three wheelchair-bound patients with MS treated with FMT for constipation. Bowel symptoms resolved following FMT; however, in all cases, there was also a progressive and dramatic improvement in neurological symptoms, with all three patients regaining the ability to walk unassisted. Two of the patients with prior indwelling urinary catheters experienced restoration of urinary function. In one patient of the three, follow-up MRI 15 years after FMT showed a halting of disease progression and ‘no evidence of active disease’.
http://articles.mercola.com/sites/articles/archive/2015/05/17/gut-bacteria-brain-health.aspx "I have a case history in Brain Maker of a young man with MS who couldn't walk without two canes and who underwent a series of fecal transplantations in Europe, and came back and walks without any assistance whatsoever. His videotape is linked to the book and is on our site. I use the video of this man walking when I do lectures to physicians. They look at this with their jaws hanging, because again, for you and me, this was never even a consideration in medical school...
http://thepowerofpoop.com/carloss-story/https://www.youtube.com/watch?v=gR33CSPNcqkIn the youtube clip his neurologist Perlmutter provides this summary in the
description section -
Published on Feb 16, 2015Carlos, forty-three, came to see me in June 2014. He needed
a cane to stand and had episodes of feeling as if his legs wouldn’t work and that he
could lose his balance easily. When I asked him about his medical history, he told
me about one morning back in 1998 when he woke up feeling “drunk and dizzy.” When we
went to see a neurologist, an MRI scan of his brain was performed, but the results
came back as normal. Carlos remained unsteady for the next two weeks and then began
to feel better. Two weeks after that, while exercising he felt as if ants were
crawling down his back. His vision blurred and, hoping to find another opinion about
his symptoms, he went to see a naturopath. That’s when he began taking various
nutritional supplements and indeed he felt a little better thereafter.
Three years later he had the sudden onset of “numbness in both legs from the waist
down.” Again he was given a new round of nutritional supplements and after three
more months, he felt somewhat improved. Two years later he had another episode and
this similarly resolved itself with more supplements. In 2010, however, he began
noticing a progressive decline in his balance and, despite various nutritional
supplements, his deterioration continued—rapidly. By 2014, Carlos went through more
tests with a neurologist, including another MRI scan of his brain. And this time,
his results revealed aggressive abnormalities, especially in the deep white matter
of his brain seen in both hemispheres and even in the brainstem. These findings, in
addition to abnormalities noted in an MRI of his cervical spine, a lumbar puncture,
and electrical testing results, all pointed to a diagnosis of multiple sclerosis.
I explained to Carlos that we now understand the role of gut bacteria in modulating
the immune system, and that recent animal research clearly had identified changes in
gut bacteria as possibly playing an important role in this disease. I then offered a
plan of action, telling him that I wanted to start a program of probiotic enemas. He
agreed without hesitation, administering probiotic-filled enemas two to three times
each week. Two weeks later, I received a phone call from him. He indicated that he
was walking more comfortably and had now gone for days without the use of a cane!
One month later we spoke on the phone again. He was continuing his probiotic enemas
three times weekly and felt that he had “stabilized.”
At that point I discussed with him the idea of rebuilding a healthy gut population
through a revolutionary new procedure called fecal microbial transplantation, or
FMT, and he agreed to do so (it’s currently not available in the U.S. for treating
MS). He chose a clinic in England where the procedure is routinely performed on an
array of immune and inflammatory problems. Before he left, I asked Carlos to
carefully chronicle his experience in a journal and report back to me.
One month after Carlos returned from England we again spoke on the phone. He
reported that after his second treatment with fecal transplantation (he received a
total of 10) he noted that his walking was dramatically improved and that it
remained that way. He told me, “I am walking so well that other people don’t know
there is anything wrong.”
http://jeffreydachmd.com/2015/05/fecal-transplantation-sweet-smell-success/The
first case was Jason, a 10 year old autistic youngster with documented dysbiosis from frequent bouts of antibiotics. Jason and his mom, Melinda, traveled to Europe for a series of fecal transplants with remarkable recovery.
Multiple Sclerosis Case Report
The second case was a Multiple Sclerosis patient unable to walk because of his neurological disorder After a series of fecal transplants in Europe, his video clip showed him walking nonchalantly down the hall of his hotel.(2) This certainly got my attention.
http://www.newyorker.com/magazine/2014/12/01/excrement-experimentGravel had stopped all his medications and was trying to manage his disease through a strict diet of broiled meat and fish and puréed vegetables. His mother showed him an article from the Times about a man who had been nearly bedridden by ulcerative colitis—a condition related to Crohn’s—and who had largely recovered after a month or so of fecal transplants.
... Just as Gravel began to research the procedure, his wife received a diagnosis of breast cancer. They began daily transplants anyway, and soon he was feeling much better. ...
For years, virtually the only proponent of FMT was Thomas Borody, a gastroenterologist in Sydney, Australia, who, in 1988, after reading Eiseman’s paper, decided to try a fecal transplant on a patient who had contracted an intestinal ailment in Fiji. The patient recovered, and Borody estimates that he has since performed the procedure five thousand times, including, with stool supplied by his father, on his mother, who suffered from crippling constipation. In addition to C. difficile patients, Borody says that he has successfully treated people with autoimmune disorders, including Crohn’s and multiple sclerosis.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284325/Fecal microbiota transplantation broadening its application beyond intestinal disorders
Intestinal dysbiosis is now known to be a complication in a myriad of diseases. Fecal microbiota transplantation (FMT), as a microbiota-target therapy, is arguably very effective for curing Clostridium difficile infection and has good outcomes in other intestinal diseases. New insights have raised an interest in FMT for the management of extra-intestinal disorders associated with gut microbiota. This review shows that it is an exciting time in the burgeoning science of FMT application in previously unexpected areas, including metabolic diseases, neuropsychiatric disorders, autoimmune diseases, allergic disorders, and tumors. A randomized controlled trial was conducted on FMT in metabolic syndrome by infusing microbiota from lean donors or from self-collected feces, with the resultant findings showing that the lean donor feces group displayed increased insulin sensitivity, along with increased levels of butyrate-producing intestinal microbiota. Case reports of FMT have also shown favorable outcomes in Parkinson’s disease, multiple sclerosis, myoclonus dystonia, chronic fatigue syndrome, and idiopathic thrombocytopenic purpura. FMT is a promising approach in the manipulation of the intestinal microbiota and has potential applications in a variety of extra-intestinal conditions associated with intestinal dysbiosis.
The two or three times I tried taking K2 supplements, I felt like utter crap after digesting the K2. And now I read
how correlated K2 is to intestinal dysbiosis. Regarding the extra veins and shit they mention, I get yellowed jaundice at my abdomen sometimes and also purplish coloring and pindot red blood spots.
http://www.healthline.com/health-news/does-ms-start-with-faulty-gut-bacteria-101914A new study comparing intestinal bacteria in healthy volunteers to bacteria found in people with MS shows a stark contrast in the number and type of microbes each group carries.
What Roopali Gandhi, Ph.D., an assistant professor of neurology, and her team found was that people with MS have a microbiome that is decidedly different from that of a healthy person.
MS patients have a much higher concentration of a microbe known as Archaea, whose cell walls and lipids make it a strong immunogenic organism, meaning that it can trigger inflammation. The researchers also noticed that MS patients have lower levels of Butyricimonas, a microbe that has anti-inflammatory properties.