Inclusion Body Myositis
Inclusion body myositis is a very rare disease, estimated to affect between 5 and 10 people in 1 million. Because of this, very little is known about the cause and there are no treatments that have been demonstrated to work. Fortunately, there is research being conducted under the sponsorship of two organizations: The Myositis Association, and the Muscular Dystrophy Association. IBM typically affects men more often than women and usually is diagnosed in the prime of life (58 to 60 years old), although most people who have been diagnosed will state that they had noticed symptoms for many years before. It is a very slow-moving illness, however it continues to progress throughout a person’s life. In my case, I noticed symptoms when I was 45, was diagnosed at age 55, and by age 65 had lost my ability to walk or stand.
To: lifedisabled
I am here to applaud you+your efforts to”take life’s lemons+make lemonade”. Especially the solution oriented posts on your blog! My interest in this arose from a family member with a Myositis diagnosis
I became paralyzed on my right side after surgery for a tumor at C-1 (neurofibromatosis) in1991, which left me learning to walk again,as well as mastering becoming a lefty! Our bodies and our spirits have an amazing capacity to compensate. I too, had my car adapted with a left-foot accellerator pedal and a steering knob. I became a confident driver again!. I went to work full-time in retail sales,and was good at it I did go on disability in 2000.. Only recently (2+1/2yrs ago) I had a run of very serious falls,which have left me unable to walk unassisted,bathe w/o assistance,bendover w/o falling over,or drive ,along with a long list of household daily living challenges. I really miss working in my garden+flowerbeds,as I was working on becoming a MasterGardener. My husband is in the process of making adaptations for accessability,now that I have a very nice motorized wheelchair.in our 200 yr-old farmhouse!
As I stumbled upon your blog,your testimony has inspired+ challenged me to get back to life again with whatever it takes, As well as become visable to my sister-in-law in my chair, because it is very likely that she will need one in the future,and right now she won’t even apply for a Disabled Access parking tag. I do think her stubborness will be to her advantage eventually. My disease also has no cure and deteriation is inevitable,but I do want to be remembered for what I could do and not what I couldn’t.
Thankyou for the kick in the pants….sincerely,annaeberhart@yahoo.com
Thank you for your obviously heartfelt comment. Please check back as I plan to post an idea for gardening from a wheelchair.
Mike
This was a very informative blog to read. I was diagnosed with IBM just a few months ago. I am only 52 years old. This disease scares me when I see the progression that many have had to endure. I have had the muscle biopsy, CPK levels increases and EMG tests all confirming IBM. I am supposed to start a Follastin gene therapy in Columbus, Ohio through Children’s Hospital by a Dr. Mendell who, along with his research professors, discovered gene therapy for quadricep weakness. They have done the testing on primates and mice and are currently doing the toxology testing. They are hoping to start the trial in April. These are injections directly in to the quadricep muscles. Have you heard of this?
Dear Teri,
My husband has IBM as well, and we are looking at the trials inOhio. Have you heard anything more about them? My husband has had all of the tests required and fits the protocol. Even has a few letters recommending him. Just wondered if you could tell us the status of the trials… Thanks.
Please respond to me at the e-mail above.
I am still waiting on the trials to begin and it’s July 2011. I was finally contacted last week and they are sending me a form in the mail to answer some questions. Did you get that?
I have Inclusion Body Myocitis, and I think I have developed a treatment for it. It has taken me years of reading, research, and trial and error testing on myself. Here it is:
Daily Use the Following:
1) 1250 mg of L-Arginine
2) 750 mg of Ornithine
3) 1 Ultra Mega Vitamin from GNC
4) 1 hour of light exercise, must involve hands and legs
5) 100 mg of COQ-10
6) 2 tablets of Alieve
7) 30 minutes of massage
This has reduced the inflammation, has eliminated most of the muscle pain, has allowed me to have increased muscle and flexibility. It is not a cure, but I call it the FACKTOR TREATMENT. It works for me, please try it, and spread my free treatment to others with IBM. I welcome anyone in the medical research community who wants to test it. Please remember to call it the FACKTOR TREATMENT.
Sincerely,
Charles Facktor
Waunakee Wisconsin
Charles, thank you for the information….
I have had IBM for 7 years now, will be 65 in May
I am taking some of what you have mentioend and
am still struggling. I take Whey/Soy Protein, Creatine
and CQ10 alomst daily…. my exercise had not been as
daily as your mentioned regimen but I am certainly
going to try to up the exercise….My left let is weaker
and I get swelling on my ankle…have you had this happening ?/ and if so…is there something that can
help the swelling to go down ??
Thank you again for your information on IBM
Ernie D Prosperi Mar 4, 2012
Terri,
I am very curious on how the Gene Therapy worked?
Can you give me any information about your treatment? Your blog is two years old and I am wondering how you are doing. My 88year old mother diagnosed with IBM (who was very active lady,dance, bowling,etc) is now using a walker to get around and a lift chair to stand up. She falls often. We are close to Columbus.
Thank You
John, please check out the posts under Chronicles of disability as they cover a lot of the adaptations I have made for this illness. I was diagnosed in 1996 and have never had any form of medical treatment as I was assured by the neurologists at UCSD that there were no successful treatments available. Although my weakness has progressed, I believe I am in fairly good health due to not having subjected my body to some of the medications that others have used. On the other hand, I have noticed that some female patients tend to respond better to medical treatment then do males. With that in mind, you might ask your mother’s neurologist or rheumatologist whether they think a course of treatment might be advantageous. I notice you say you are close to Columbus, so I am sure you know that there is a medical trial going on there, but so far we have not heard anything about the results.
Mike
Yes I know about those trials. Unfortunately I am unable to participate for a couple of reasons–I cannot travel and I cannot walk, so I meet none of the criteria to be included. However I will be watching the progress with considerable interest. While I can no longer walk I still have muscles that allow me to get through the day, although those muscles are constantly deteriorating. I’m hopeful that whatever therapy eventually results could then be applied to those muscles that still have some function remaining.
Because this illness is rare, it is difficult to find any accurate projections as to what the future will hold for an individual who was diagnosed with IBM. My case appears to be one of the more severe, although I certainly had quite a few good years after I was diagnosed at age 55.
One thing I would suggest to anyone who is newly diagnosed is that they enjoy the abilities they currently have as much as possible. For example, we did some traveling after I was diagnosed – more than we would’ve done otherwise – but even so I wish we had done more because now I am “stuck” in San Diego County. (I know, most people would consider that to be not such a terrible fate.)
Good luck with the trial and thank you very much for commenting on my blog.
I am wondering if you could give me more information about the follistatin clinical trial. My husband has had all of the tests, biopsies, etc at Johns Hopkins, and even several letters of recommendation to Dr. Mendell to include him in the trial. We have not heard anything in awhile and my husband feels very discouraged. Do you have any other suggestions for us as far as who to contact? Do you have any other information about the trial that would be helpful to us? Thank you in advance… Heidi Bradbury
My best advice is to check out the two forums listed under “Please Visit” on this site: Myositis Support Group and The Myositis Association (click “Community” on their site to find the forum – you need to be a member to enter their forum). I have heard the trials were to have started by now but have been delayed.
Hi everyone,
I am in Australia and have had IBM for 0ver 15 years ( I’m 53 ). I have tried pretty much everything to slow its progression, and I think I have managed to achieve that. I have over the years had high dose steriods, methatrexate, rutuximab and just about everything else that various people had reported may have helped.
I started HGH ( Human Growth Hormone ) about 8 months ago, .4mg daily and I really beleive it has helped. I am still very weak and cannot get up stairs or out of low chairs but I can walk 8 miles a day and my falls have drastically reduced. I also feel both mentally and physically better. I also have been having IVG every 2 weeks for the same period of time, so I have no idea if its both working together or one or the other.
It has also enabled me to go to the gym 4 days a week, only light excersizes but it all seems to have helped.
I have also been following very closely the Follistatin story. You can purcahse Follistatin through the body building network, but it seems bodybuilders have been having severe problems with tendons after they have used it. There also seems to be a lot of medics that beleive it may only be beneficial when used with healthy muscles.
I am also trying to get on the trial in Ohio as it seems the only real positive solution that may be currently available. I can only pray that it works.
Good luck everyone.
Brad
Hi Brad
My husband has been diagnosed with IBM so we are trying to do as much research as we can. I read your entry and wonder if you could please tell me what IVG is. We are also in Australia and find that there seems to be very little information relating to this disease in Australia.
Hope to hear from you.
Jenny
It seems like the problem with Follistatin from health food store is delevering the dosage to specific locations of the body that need it. I think all of us hope the Ohio trials work. At least their approach is in a new research direction.
Regards, John
Brad and Jenny I also live in Australia. I am in the proces of being diagnosed with IBM, a very long and painful process. Are you aware of any support groups for IBM in Australia, or any particular doctor I should be seeing to continue my care?
Hi Brad, my husband has been dianosed IBM since year 2000 and unfortunatelly neurologists at the Prince Alfred Hospital did not recommend any therapy in that time. It was until 2010 that my husband had two sessions of IVIg, but it seemed for him that in every session he deteriorated instead of experiencing an improvement. I am his wife and carer and I am doing all treatments at home. Hospitals and Gyms are quite scary for my husband, he suffers panic attacks and does not adjust to do exercise in crowded environments and noisy environments. So everything has to be done at home in quite places with a lot of patience. Residential Respite did not help him, even though it is needed for my own health as a carer. So there is no respite for me as a carer, and my husband is having all suplements you can imagine to help him to function. Lots of water I believe is a key factor to have your body working and gentle exercises in upper and lower limbs and back. I am happy you are still doing well after so many years diagnosed.
I am a 50-year-old draftsman in Texas who has been blessed with good health, and I found your site while researching ADA showers. It is moving and humbling. I am also a Latin and Swing dancer, and I enjoyed the link to wheelchair dancing. Your paintings are beautiful, too.
Thank you for sharing your story, and may God bless you here and in the hereafter.
TO CHARLES FACKTOR / THE FACKTOR TREATMENT
Charles, thank you for the information….
I have had IBM for 7 years now, will be 65 in May
I am taking some of what you have mentioend and
am still struggling. I take Whey/Soy Protein, Creatine
and CQ10 alomst daily…. my exercise had not been as
daily as your mentioned regimen but I am certainly
going to try to up the exercise….My left let is weaker
and I get swelling on my ankle…have you had this happening ?/ and if so…is there something that can
help the swelling to go down ??
Thank you again for your information on IBM
Ernie D Prosperi Mar 4, 2012
I have had IBM for fours plus yrs and have really noticed more changes of weakend muscles. Columbus has called me back to measure my muscle mass to see how the disease as progressed and I’m hoping they will have another round of clinical research after this one is done, cause I can tell I’m getting weaker. But has anybody looked into other treatments like stem cell?
Just wondering if anyone of the above posters had IBM iduced by taking ststin medication ?? My Name is Brad Adelaide Australia and i along with many others suffer debilitating muscle weakness wasting and pain which has been induced by statin medications. Ploease feel free to message me at bradankor@hotmail.com
In my case I have never taken a statin – my cholesterol has always been quite low. However I have read that statins can cause muscle wasting.
I am in new Zealand, was diagnosed with IBM 2 yrs ago. It has been coming on for years. My legs are getting increasingly unstable, have to push myself up out of a chair and cannot climb stairs. I am also very giddy, has anyone else got this symptom? My drs just tell me no treatment is of any help. I do not know of any one else in NZ with this disease. My hands are becoming weaker which once runs me greatly. I am a positive person and try o look on the bright side of things. I would love to hear from anyone via the above email. I keep looking up! Regards Phyllis
Phyllis,
With a population of more than 4 million of which 70% are of European origin, there should be at least 2 dozen people in New Zealand who have IBM. just a simple search for inclusion body myositis New Zealand brings up a number of organizations and studies that might give you a connection to finding help. Here is one of them: http://www.ann.org.au/inclusion-body-myositis/. You might also contact the Department of Neurology at Auckland Hospital. I am afraid that your doctors are giving you the right information at this time about the lack of a suitable treatment, however there are several studies going on that might offer hope not too far down the line.