In Pursuit of ABX - May I have coffee with my milkshake?

A forum for the discussion of antibiotics as a potential therapy for MS

Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby jimmylegs » Wed Dec 28, 2016 7:02 am

napay i completely missed your post earlier in dec. long time no see! :)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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MSC Stem Cell Therapy articles

Postby notasperfectasyou » Mon Jan 02, 2017 8:06 am

Hi Jimmylegs, it has been a while. Posting for me is about sharing and I don't generally post unless I have something to share. I'm now deep into researching stem cells for Kim. It makes no sense to do all this reading without sharing what I find. It is not a simple topic. Here are some good articles I have read recently on that relate to Mesenchymal Stem Cell therapy:

Xie, Chong et al. 2016 Induced Stem Cells as a Novel Multiple Sclerosis Therapy. There is a full text link on this website.

Cohen, Jeffrey 2013 Mesenchymal stem cell transplantation in multiple sclerosis. There is a full text link on this website.

Minteer, Danielle et al. 2015 Adipose stem cells: biology, safety, regulation, and regenerative potential. Click here for full text

Bai, Lianhua et al. 2012 Hepatocyte growth factor mediates mesenchymal stem cell–induced recovery in multiple sclerosis models. There is a full text link on this website.

Lindsay, Susan et al. 2016 Are nestin-positive mesenchymal stromal cells a better source of cells for CNS repair?. Click here for full text

Jadasz, Janusz et al. 2016 Recent achievements in stem cell-mediated myelin repair. Click here for full text

I also have a stack on Hematopoietic Stem Cell therapy, which I will post later. As for now, we are looking to have the MSC therapy done at Celltex. Ken
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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HSCT Stem Cell Therapy articles

Postby notasperfectasyou » Thu Feb 02, 2017 3:03 pm

I have a bunch of articles about Hematopoietic Stem Cell Transplantation (HSCT). I'll keep adding them to this post. Most of the articles revolve around SPMS since that is what Kim has.

Burt, Richard et al. 2012 Autologous hematopoietic stem cell transplantation for multiple sclerosis – if confused or hesitant, remember: ‘Treat with standard immune suppressive drugs and if no inflammation, no response’. There is a link to a free full text PDF on this website.
- This is an editorial and it is a few years old, however, there is a lot of good information here that is responsive to questions I've been left with after reading many of the other articles I've referenced below. Therefore, this article goes on the top of the list.
- Explains that there are varying way to adjust the toxicity of HSCT conditioning (chemo). An extreme regimen is described as one that includes high-dose Busulfan or Total Body Irradiation (TBI). BEAM and ATG is said to be a safer intermediate intensity regimen. it is implied that Cyclophosphamide and ATG/Rituximab is safer, having not being attributed to any morbidity. I have listed links for these agents below.
- Suggests that HSCT mostly benefits younger patients who have had MS for a shorter period of time. Also, adds that patients with higher EDSS scores and no active inflammation are not likely to get a good response from HSCT.

List of Agents that may be used in HSCT conditioning regimen

Anti-thymocyte globulin (ATG)
Alemtuzumab (Campath, Lemtrada)
Rituximab (Rituxan)
Busulfan (Busulfex, Myleran)
Cyclophosphamide (Cytoxan, Neosar)
Carmustine (BiCNU, Gliadel)
Melphalan (Alkeran, Evomela)
Fludarabine (Fludara)
Etoposide (VePesid)
Cytosine Arabinoside (Ara-c, Fludara)

Some articles will discuss a combination of drugs abbreviated as BEAM, which is: Carmustine (BiCNU), Etoposide, Cytosine Arabinoside, and Melphalan.

Bakhuraysah, Maha et al. 2016 Hematopoietic stem cell transplantation for multiple sclerosis: is it a clinical reality?. There is a link to a free full text PDF on this website.
- This is a review article. Good article that explains what HSCT is.
- Summarizes a number of studies to show benefits.
- References Shevchenko et al. (2015), abstract here. 98 of 99 patients had neurological improvement or stabilization 6 months after HSCT.

Walker, Lisa et al. 2016 Longitudinal change in Paced Auditory Serial Addition Test (PASAT) performance following immunoablative therapy and haematopoietic stem cell transplant in multiple sclerosis. Here is a separate link to a free full text PDF of this article.
- 3 year study that showed HSCT improved or stabalized disability in RRMS and SPMS
- Improved cognition
- Patients were treated with cyclophosphamide, busulfan and ATG

Mancardi, Giovanni et al. 2015 Autologous hematopoietic stem cell transplantation in multiple sclerosis: a phase II trial. Here is a separate link to a free full text PDF of this article.
- This is a comparative study between HSCT and Mitoxantrone (Novantrone)
- Study included SPMS patients with documented worsening in the past year.
- Patients were treated with intermediate intensity conditioning regimen, BEAM/ATG
- HSCT significantly reduced the number of MRI lesions counted over the 4 year study when compared to Mitoxantrone
- No difference in EDSS change at years 1, 2, 3, and 4 was found between the two treatment arms
- References Burman et al. 2014, Autologous haematopoietic stem cell transplantation for aggressive multiple sclerosis: the Swedish experience. Here is a separate link to a free full text PDF of this article. This article concludes that HSCT is a very effective treatment of inflammatory active MS.

Pandit, Awadh et al. 2015 Autologous hematopoietic stem cell transplantation in progressive severe multiple sclerosis. There is a link to a free full text PDF on this website.
- This article presents a case summary of one patient diagnosed with severe SPMS
- EDSS was reduced from 6.5 to 5.0
- Patient was treated with cyclophosphamide, ATG, and methylprednisolone

Mancardi, Giovanni et al. 2012 Autologous haematopoietic stem cell transplantation with an intermediate intensity conditioning regimen in multiple sclerosis: the Italian multi-centre experience. There is a link to a free full text PDF on this website.
- 55% of the patients in this study were SPMS.
- There was a long-term follow up (7-10 years) with 18 patients, which showed stability in EDSS scores in 8 patients.
- Patients were treated with intermediate intensity conditioning regimen, BEAM/ATG

Saccardi, Riccardo et al. 2012 A prospective, randomized, controlled trial of autologous haematopoietic stem cell transplantation for aggressive multiple sclerosis: a position paper. There is a link to a free full text PDF on this website.
- HSCT is a higher risk therapy.
- Decreasing mortality since 2001 is likely due to avoidance of High-Dose Busulfan and Anti-T-Lymphocyte globulin (ATG).

Atkins, Harold et al. 2012 Hematopoietic Stem Cell Therapy for Multiple Sclerosis: Top 10 Lessons Learned. There is a link to a free full text PDF on this website.
- This is a review article. HSCT can be tailored to toxicity risks.
- Neuropathology rather than disability seems to be determinative of HSCT outcomes.
- Can stabilize disability, cease progression of SPMS.
- References Bowen et al. (2012), Autologous hematopoietic cell transplantation following high-dose immunosuppressive therapy for advanced multiple sclerosis: long-term results. Patients with advanced MS remained stable as long as 7 years after transplant. Patients were treated with TBI, Cyclophosphamide and ATG.

Farge, Dominique et al. 2010 Autologous hematopoietic stem cell transplantation for autoimmune diseases: an observational study on 12 years’ experience from the European Group for Blood and Marrow Transplantation Working Party on Autoimmune Diseases. There is a link to a free full text PDF on this website.
- Peripheral blood (v/s bone marrow) as a source of stem cells appeared to improve overall survival.
- Extremely low number and decreasing number of deaths in recent years.
- Various conditioning regimens were used.
- References Burt et al. (2009), Autologous non-myeloablative haemopoietic stem cell transplantation in relapsing-remitting multiple sclerosis: a phase I/II study. This is an RRMS study. A conditioning regimen of Cyclophosphamide, Alemtuzumab/ATG was used.

Guimaraes, Fabio et al. 2010 Impact of autologous hematopoetic stem cell transplantation on the quality of life of patients with multiple sclerosis. There is a link to a free full text PDF on this website.
- 79% of patients showed stabilization or neurological improvement 1 year post transplantation
- Patients showed an improved quality of life
- Most of the patients in the study were SPMS

Saccardi, Riccardo et al. 2005 Autologous HSCT for severe progressive multiple sclerosis in a multicenter trial: impact on disease activity and quality of life. There is a link to a free full text PDF on this website.
- One of the few studies that focuses on improved quality of life
- 74% of patients were progression-free for 3 years - HSCT induced a prolonged clinical stabilization
- Most patients in the study were SPMS with EDSS scores between 5.0 and 6.5
- A conditioning regimen of BEAM and ATG was used


FINDING A CLINIC

Here are some links that have helped me identify hospitals where HSCT is being done for MS. HSCT Hospitals. And this one More HSCT Hospitals. I have emailed a number of these and this is what I have found:

Northwestern University says they are only accepting RRMS patients. Noted conditioning regimen: Cyclophosphamide and Alemtuzumab (or thymoglobulin). Also, see Dr. Burt above.
Karolinska University Hospital says they are only accepting RRMS patients. Noted that they say that they use the same protocol as Dr. Burt.
Clinica Ruiz says they are accepting some SPMS and PPMS with EDSS of 7 or less. Noted conditioning regimen: Cyclophosphamide and Rituximab.
Seattle Cancer Care Alliance|Fred Hutchinson Cancer Research Center only accepting RRMS patients.
Careggi University Hospital says they accept patients with EDSS of 6.0 or less. Conditioning not noted, but see Dr. Saccardi above.
A.A. Maximov Department of Hematology and Cellular Therapy accepts patients with EDSS of 6.5 or less. Noted conditioning regimen: Cyclophosphamide and Rituximab.
Copenhagen University Hospital does not provide HSCT to patients from abroad.
Universitätsklinikum Heidelberg sent me a bunch of forms to fill out, did not have any stated criteria.
Colorado Blood Cancer Institute sent me a pre-screening form to fill out, did not have any stated criteria.
The Ottawa General Hospital cannot treat people without valid Canadian health coverage.



My Other Researched Posts
Understanding MS 101: Doctor Talk and People Talk
Understanding MS 102: My Doctor is Expressing Cytokines
CAP for MS: Q&A and Peer Reviewed Support
In Pursuit of ABX - May I have coffee with my milkshake?
Last edited by notasperfectasyou on Fri Feb 24, 2017 1:26 pm, edited 24 times in total.
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby Loriyas » Wed Feb 08, 2017 5:41 am

Hi Ken
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby notasperfectasyou » Wed Feb 08, 2017 8:12 am

Loriyas wrote:Hi Ken


Hi Lori, How have you been. I took a quick look at your log, but didn't look updated. We just saw the doc in November (timed the appt with the Keith Urban concert :-D ). He had little that was new and Kim's been sliding. He suggested we might look at stem cells, has one other patient who has done it, got us in touch with her. So now Kim has a gofundme page because stem cells are not covered by insurance. Since I'm actively trying to discern my way through this stem cell stuff, I thought I should comeback here and share. Ken
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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