16. Day 45: Plus Some Comments on CIDP, MS, HIV and Other Bad Stuff

My personal report from Day 45 remains a very positive one.  I returned to work a couple of weeks ago and have gradually increased my physical activity (and reduced my dependence on special assistance from others).  I have now essentially recovered from other chemo/stem cell procedure back to baseline.  I had a follow up doctor’s appointment a few days ago and my blood test results were very close to normal.

The focus now is to the future.  Will this actually work?  How much reversal of the damage from nemaline myopathy will occur.  It is tempting to look for signs of improvement even at this early stage and, in some ways, I think I can observe or sense some of those.  But it really is just too early to say. In any event, for now, my plan is to step up my physical activity day to day and to try to target as many separate muscle groups as possible.


This Blog Site is addressed to use of autologous (or hematopoietic) stem cell therapy (starting with high dose chemotherapy) as a treatment for a particular rare muscle disease – nemaline myopathy.  However, it should be noted that this regimen is commonly used for several other diseases.  With that in mind, some of the observations and experience recounted here have some broader relevance.  Please note this caveat:  the discussion that follows is from an amateur and may contain technical oversimplifications.

Conceptually, it would appear that high dose chemotherapy coupled with autologous stem cell reinfusion could have favorable results with diseases if the following elements are true:

  • The disease is sufficiently limited to certain blood-related cells so that the chemotherapy can thoroughly kill off the disease.
  • That also means that the disease was not simply inherited but was acquired.
  • The destroyed cells can be replenished from the stem cell transplant (which means that the bone marrow and other stem cell mechanisms have not been severely damaged).
  • The patient can survive the procedure (which might be in doubt if the patient is severely debilitated by his disease or from prior treatments).

This sort of therapy has been used for some decades for various cancers that effect bone marrow or blood cells.  This includes leukemia, multiple myeloma, and lymphoma.  Another application, also implicating bone marrow problems, is a rare “protein folding” disease called amyloidosis (discussed a bit more at the end of this post).  I even came across an article suggesting that Alzheimer’s may be in part an autoimmune disease characterized by amyloid deposits.  If so, a treatment that treats such deposits could even have beneficial effects with respect to Alzheimer’s.

At least as applied to my case, the treatment turned out to be far easier than for typical patients with these sorts of cancers.  For various reasons (beyond the knowledge I’ve gathered up so far). various serious physical conditions (such as cancers) increase the risks surrounding the procedure.  The patient may be subjected to life-threatening infections that may arise while the patient’s immune system is so severely compromised.  Or, while the Stem Cell population is not infected with the targeted disease (such as cancer), that disease and prior treatments may have severely undermined the ability of the body (the bone marrow) to replenish such Stem Cells and facilitate their development into needed white (or red) blood cells.

An interesting case is HIV.  Hypothetically, if HIV involves a mutation or attack on the body’s immune system, what would the effect on HIV be if that immune system was killed off by this high-dose chemotherapy and followed by transplant of Stem Cells?  While the topic is light years past my understanding, it appears that this approach has been given some attention.  See this article:


There are undoubtedly lots of problems with such a treatment.  Notable ones appear to be that HIV patients are very susceptible to serious diseases and also have compromised ability to regenerate Stem Cells and subsequently immune cells.

Returning to more mundane subjects, a broad gamut of automimmune diseases might be subject to effective treatment with stem cell therapy.  One example is CIDP (Chronic Immune Demyelinating Polyneuropathy).  A trial study of use of Stem Cell therapy for such condition is currently under way at Northwestern University.  I mentioned in an earlier post that a woman from Orange County flew to Moscow while I was in the hospital to receive this treatment from a doctor there who has been using this treatment for a wide variety of conditions.  (I do not have any subsequent word on how that treatment has been going for her).

One of the conditions that the Russian doctor has been treating in this manner is Multiple Sclerosis (MS).  This is also a demyelinating autoimmune condition and thus, at least if this is an acquired disease rather than a genetic one, should also be an interesting candidate for the procedure.  Here is an interesting link to a blog about a woman’s successful treatment (in Russia) for MS:


To maintain full perspective, here is a newspaper article about a woman who died in the course of such treatment:


Here is a link to an NIH related study on use of stem cell therapy for MS topic:


Amyloidosis, mentioned above, is a malfunction in bone marrow in which certain peptides or protein chains, that should be part of immune cells, become improperly formed in a way that makes them insoluble in water.  These protein tangles then end up deposited in various vital organs and can lead to severe damage.  It is hard to resist a comparison of nemaline myopathy (with “rod” deposits in muscle cells) to amyloidosis.  In both cases, as I understand them, something in causing bone marrow to function improperly in connecting with immune cells.  Whether or not that is characterized as “automimmune,” stem cell therapy may logically have beneficial effects if it does away with the poorly functioning bone marrow (assuming the destroyed cells are then replaced with nice fresh ones by means of the stem cell transplant).  Of course, all of that involves a series of assumptions that are not fully proven at this time.


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