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Living with Polyneuropathy CIDP, GBS, & CMT

Dr. Richard Burt stem cell treatment for autoimmune disease i.e. MS, CIDP, Scleraderma, Lupus, Crohn's, etc


#1

Dr. Burt does not get stem cells from "throw away parts" as stated in one of these blogs. He injects the patient with a drug which stimulates patient's bone marrow to produce more stem cells. Then patient receives a few days of chemo (Cytoxin?) which kills off the immune system. Patient is in absolutely sterile surroundings when this happens. The previously harvested stemcells are then reinfused into him. These stemcells immediately begin building a new immune system that doesn't have the disease fighting cells which were attacking patient's own tissue. My son had this treatment for a very malignant form of CIDP in Feb/Mar '10. Myelin is a fatty substance which lines & insulates the nerves, and it grows back very fast. It's only the nerves themselves which grow back slowly. In son's case he could not walk, use his hands, & was beginning to have trouble breathing & with his eyesight when he went to Northwestern. But he had gotten so sick so fast that most of the damage was deMyelination, rather than axonal nerve damage. After the stem cell transplant, within 30 days his immune counts were back to normal, within 6 weeks he was walking haltingly & could feed himself. Within 1 year he had recovered all function. He is now nearly 5 years post transplant, during which he's had to use no medication because there's no disease. He takes no immunosuppressants because the stemcells were from his own body, not a foreign bone marrow donor. This treatment & Dr. Burt was a miracle. The negative tales I see on this blog are just fiction. Son was there, son went through it, son came out the other side a well man.


#2

Wonderful! Life is good! Son of a gun!

Unfortunately, not everyone is a young boy with damage only to the myelin from a recent affliction of CIDP. Many people are disqualified for HSCT by age, other serious diseases or chronic conditions, and health insurance prohibitions.

Many times CIDP is advance to the point where axions, muscles and sensory cell structures are beyond repair by any means. Many time CIDP is misdiagnosed as diabetes and 10- 15 years of destructive CIDP may place a person outside the parameters of HSCT.

Although your testament is very positive, it is only an antidote of one individual and generalizes with very simple statements when CIDP is a very complex disease involving mostly the neuro-muscular system, but may also encompass IgM or IgG related cancers. If a cancer is related, from what I have read about HSCT, the patient is immediately disqualified.

And, people have suffered higher chances of co-morbidity and death has occured from HSCT.

I did query my neuro about HSCT and antigen-specific immune therapy. He responded by saying the risks are high for both of these therapies and at 64 conventional therapy probably will serve me better.


#3



estaban said:

Wonderful! Life is good! Son of a gun!

Unfortunately, not everyone is a young boy with damage only to the myelin from a recent affliction of CIDP. Many people are disqualified for HSCT by age, other serious diseases or chronic conditions, and health insurance prohibitions.

Many times CIDP is advance to the point where axions, muscles and sensory cell structures are beyond repair by any means. Many time CIDP is misdiagnosed as diabetes and 10- 15 years of destructive CIDP may place a person outside the parameters of HSCT.

Although your testament is very positive, it is only an antidote of one individual and generalizes with very simple statements when CIDP is a very complex disease involving mostly the neuro-muscular system, but may also encompass IgM or IgG related cancers. If a cancer is related, from what I have read about HSCT, the patient is immediately disqualified.

And, people have suffered higher chances of co-morbidity and death has occured from HSCT.

I did query my neuro about HSCT and antigen-specific immune therapy. He responded by saying the risks are high for both of these therapies and at 64 conventional therapy probably will serve me better.


#4



Hdanhakl said: Son was 51 1/2 when he had SCT. Had been TOLD THE SAME THINGS YOU HAVE by UCSF, STANFORD, AND MAYO CLINIc in Minn. Basically, they told him to go home & keep on the same treatments that had failed, even tho he was so close to death he had no more time. The nerves that started failing in his feet & hands had affected thoracic muscles impairing breathing. Clearly you should do what you feel comfortable doing even if that's to accept the disease & stay with your known docs. But because that's best for you doesn't mean others should be discouraged from looking into it. Re safety, at the time my son was there Jan - Mar '10, Dr. Burt had treated 400 MS & 12 CIDP patients, lost 2 (one went crazy & walked out of the hospital after the chemo had knocked out his immune system.) Given that these were very sick patients to begin with, I think more would have died without the treatment than died during it. But what do I know, except that my son and every other Burt patient we know is so grateful they had it & recommend it to everyone whom Burt will accept - which is only those he thinks he can help. This guy isn't trolling for patients, believe me. When these patients leave, after a couple of months they are off all meds - no more plasmaperesis, ivig, steroid, nothing - nada. They no longer need it because they no longer have the disease. Son is now 4 1/2 yrs free of disease, free of treatment. Helen



estaban said:

Wonderful! Life is good! Son of a gun!

Unfortunately, not everyone is a young boy with damage only to the myelin from a recent affliction of CIDP. Many people are disqualified for HSCT by age, other serious diseases or chronic conditions, and health insurance prohibitions.

Many times CIDP is advance to the point where axions, muscles and sensory cell structures are beyond repair by any means. Many time CIDP is misdiagnosed as diabetes and 10- 15 years of destructive CIDP may place a person outside the parameters of HSCT.

Although your testament is very positive, it is only an antidote of one individual and generalizes with very simple statements when CIDP is a very complex disease involving mostly the neuro-muscular system, but may also encompass IgM or IgG related cancers. If a cancer is related, from what I have read about HSCT, the patient is immediately disqualified.

And, people have suffered higher chances of co-morbidity and death has occured from HSCT.

I did query my neuro about HSCT and antigen-specific immune therapy. He responded by saying the risks are high for both of these therapies and at 64 conventional therapy probably will serve me better.


#5



Hdanhakl said:

Son was 51 1/2 when he had SCT. Had been TOLD THE SAME THINGS YOU HAVE by UCSF, STANFORD, AND MAYO CLINIc in Minn. Basically, they told him to go home & keep on the same treatments that had failed, even tho he was so close to death he had no more time. The nerves that started failing in his feet & hands had affected thoracic muscles impairing breathing. Clearly you should do what you feel comfortable doing even if that's to accept the disease & stay with your known docs. But because that's best for you doesn't mean others should be discouraged from looking into it. Re safety, at the time my son was there Jan - Mar '10, Dr. Burt had treated 400 MS & 12 CIDP patients, lost 2 (one went crazy & walked out of the hospital after the chemo had knocked out his immune system.) Given that these were very sick patients to begin with, I think more would have died without the treatment than died during it. But what do I know, except that my son and every other Burt patient we know is so grateful they had it & recommend it to everyone whom Burt will accept - which is only those he thinks he can help. This guy isn't trolling for patients, believe me. When these patients leave, after a couple of months they are off all meds - no more plasmaperesis, ivig, steroid, nothing - nada. They no longer need it because they no longer have the disease. Son is now 4 1/2 yrs free of disease, free of treatment. Helen


estaban said:

Wonderful! Life is good! Son of a gun!

Unfortunately, not everyone is a young boy with damage only to the myelin from a recent affliction of CIDP. Many people are disqualified for HSCT by age, other serious diseases or chronic conditions, and health insurance prohibitions.

Many times CIDP is advance to the point where axions, muscles and sensory cell structures are beyond repair by any means. Many time CIDP is misdiagnosed as diabetes and 10- 15 years of destructive CIDP may place a person outside the parameters of HSCT.

Although your testament is very positive, it is only an antidote of one individual and generalizes with very simple statements when CIDP is a very complex disease involving mostly the neuro-muscular system, but may also encompass IgM or IgG related cancers. If a cancer is related, from what I have read about HSCT, the patient is immediately disqualified.

And, people have suffered higher chances of co-morbidity and death has occured from HSCT.

I did query my neuro about HSCT and antigen-specific immune therapy. He responded by saying the risks are high for both of these therapies and at 64 conventional therapy probably will serve me better.