John, Volunteer Mentor | @johnbishop | Feb 22, 2021
Hello @rgg, Welcome to Mayo Clinic Connect. PUBMED can be a good resource for information. May I ask what condition are you looking to treat with stem cells?
Ginger, Volunteer Mentor | @gingerw | Feb 22, 2021
@rgg There are so many conditions that acquire the label of autoimmune disease. What diseases are you specifically referring to? Are you a patient with an autoimmune disorder, and looking at options? If so, would you be open to sharing your disorder and what you have tried before?
Ginger
@rgg, just to make sure you know where I am coming from, I have several DNA-type diseases which work for and against each other. Gelsolin, Fukutin Limb Girdle Muscular Dystrophy, Acute Lymphocytic(?). Leukemia, various anemias, cancers, Encephalopathy, Blepharochalasis, Hypothermic and hyperthermic Sensitive Purpura, etc. I have begun a list of the DNA I have which may or may not be active but which are damaging if they do start operating. Strangely, the labs can not find any evidence that I have had chicken pox or mumps. However, I have been diagnosed with each by MDs multiple times, including 5 times for mumps. So far, there are about 90 of the DNA disorders/diseases. About 50 are considered clinically active at this time. But I am almost 81 years old, so I can collect anything I want, I guess. When I was born, the MD said he did not expect me to see my third birthday, so I have outlived that guess. Just make sure you protect you health as best you can, and don't be afraid of what happens next. I have had 30 heart catheterizations and 2 cardiac bypasses, and 8 cancer surgeries. Now it turns out that most of this could have been avoided if I had known about my DNA much earlier. And the environmental impacts which may have altered my genetic structures. Radon, Nuclear test radiation, Round-Up, 2-4-d, 2-4-5T, DDT, Sulfa, Ether, Very cold, very hot work sites. Insects, work-until-total-fatigue-then-literally-drop. Any of these can cause variants to come along. And, oh, yes, I was born. That was quite the DNA-shaping experience. Try it some time.
Hello @rgg, Welcome to Mayo Clinic Connect. PUBMED can be a good resource for information. May I ask what condition are you looking to treat with stem cells?
@rgg There are so many conditions that acquire the label of autoimmune disease. What diseases are you specifically referring to? Are you a patient with an autoimmune disorder, and looking at options? If so, would you be open to sharing your disorder and what you have tried before?
Ginger
Hi, I have RA and there is a direct correlation between RA and mouth and gut bacteria. This correlation also shows in several other autoimmune diseases. I am always looking for options as currently doctors are not trained in personalized medicine, only how to hand out pills. I use Minocycline and supplements
If you are near one of the Mayo Clinic campuses [Rochester, MN; Scottsdale, AZ; or Jacksonville, FL], it would be a good starting point to get an appointment there. If not, a large teaching hospital may be of help to you. Similar to many other autoimmune diseases, CNS vasculitis can be treated but not cured.
Will you come back and tell me what you decide?
Ginger
I don’t know anything about CNS but have found great help with my MPA vasculitis with a Facebook support group which includes patients, parents, and spouses. There are several for CNS vasculitis so you might check out all and see which is best for you. Also, check http://www.VasculitisFoundation.org for information and resources. I can be reached by sending me a private message if I can be of further assistance. Molly
Hello @rgg, Welcome to Mayo Clinic Connect. PUBMED can be a good resource for information. May I ask what condition are you looking to treat with stem cells?
@rgg Welcome to Mayo Clinic Connect, a place to give and get support.
You bring up an interesting topic that hasn't had much discussion in the Autoimmune group.
Below I have linked a previous but short discussion on this topic that you may wish to browse.
- Neuropathy Autoimmune Disease https://connect.mayoclinic.org/discussion/neuropathy-autoimmune-disease/
Members like @becsbuddy @1065408 @gingerw @autumn12575 @ldestella @oldkarl @drolker @jlander are recently active members of the Autoimmune group and may be able give testimonial or information.
May I ask if this is scholarly work or if you have an Autoimmune disease?
@rgg There are so many conditions that acquire the label of autoimmune disease. What diseases are you specifically referring to? Are you a patient with an autoimmune disorder, and looking at options? If so, would you be open to sharing your disorder and what you have tried before?
Ginger
@rgg, just to make sure you know where I am coming from, I have several DNA-type diseases which work for and against each other. Gelsolin, Fukutin Limb Girdle Muscular Dystrophy, Acute Lymphocytic(?). Leukemia, various anemias, cancers, Encephalopathy, Blepharochalasis, Hypothermic and hyperthermic Sensitive Purpura, etc. I have begun a list of the DNA I have which may or may not be active but which are damaging if they do start operating. Strangely, the labs can not find any evidence that I have had chicken pox or mumps. However, I have been diagnosed with each by MDs multiple times, including 5 times for mumps. So far, there are about 90 of the DNA disorders/diseases. About 50 are considered clinically active at this time. But I am almost 81 years old, so I can collect anything I want, I guess. When I was born, the MD said he did not expect me to see my third birthday, so I have outlived that guess. Just make sure you protect you health as best you can, and don't be afraid of what happens next. I have had 30 heart catheterizations and 2 cardiac bypasses, and 8 cancer surgeries. Now it turns out that most of this could have been avoided if I had known about my DNA much earlier. And the environmental impacts which may have altered my genetic structures. Radon, Nuclear test radiation, Round-Up, 2-4-d, 2-4-5T, DDT, Sulfa, Ether, Very cold, very hot work sites. Insects, work-until-total-fatigue-then-literally-drop. Any of these can cause variants to come along. And, oh, yes, I was born. That was quite the DNA-shaping experience. Try it some time.
Hi, I worked on a medical campus so I have done a lot of research in PUBMED. I am looking for RA and stem cells specifically
I have RA but because I also worked on a medical campus I do research as well into the latest studies
Hi, I have RA and there is a direct correlation between RA and mouth and gut bacteria. This correlation also shows in several other autoimmune diseases. I am always looking for options as currently doctors are not trained in personalized medicine, only how to hand out pills. I use Minocycline and supplements
I am looking for assistance direction for my daughter with CNS Vasculitis.... also categorized under Autoimmune disorders /conditions
@leezer Welcome to Mayo Clinic Connect. I see you have been a member for a while, but this is your first post. Honestly, I don't know anything about CNS, and did some reading up on it. Here is an article by the Vasculitis Foundation https://www.vasculitisfoundation.org/education/forms/central-nervous-system/
It appears this condition may be a standalone issue, or a secondary concern combined with something else. Do you know which one your daughter has been diagnosed with? Also, here is an article from Cleveland Clinic https://my.clevelandclinic.org/health/diseases/13205-central-nervous-system-vasculitis. And yet more information is available from Mayo Clinic, a trusted source: https://www.mayoclinic.org/diseases-conditions/vasculitis/symptoms-causes/syc-20363435
If you are near one of the Mayo Clinic campuses [Rochester, MN; Scottsdale, AZ; or Jacksonville, FL], it would be a good starting point to get an appointment there. If not, a large teaching hospital may be of help to you. Similar to many other autoimmune diseases, CNS vasculitis can be treated but not cured.
Will you come back and tell me what you decide?
Ginger
I don’t know anything about CNS but have found great help with my MPA vasculitis with a Facebook support group which includes patients, parents, and spouses. There are several for CNS vasculitis so you might check out all and see which is best for you. Also, check http://www.VasculitisFoundation.org for information and resources. I can be reached by sending me a private message if I can be of further assistance. Molly